Whether it is a parent, and old friend or a spouse, visiting someone you love with dementia can be difficult. People don't know what to say or do. They feel uncertain and embarrassed. Some people just disappear all together. The following tips for making visits easier comes from Ryleysforum. I'm sure you'll find her advice helpful. Enjoy!

Anyone who has visited someone in
hospital or in a long term care setting can relate to the initial stress of
visiting! I feel like somewhat of an expert when it comes to visiting!
(Considering on my first visit the words that were exchanged were: "You
can just turn around and walk right back out!"

Even now after I have visited all day I often return
home to phone calls saying "Where are you? You said you were coming here
today!" Needless to say memorable or not, we soon both couldn't get enough
of each other.

Visiting can be very traditional. You visit, you bring
gifts! Gifts ARE lovely. Here are some suggestions:

a treat, (usually just enough to eat during the
visit) you don't want to invite a tummy ache, unwanted illness or creatures.

a short story, Readers Digest, The Sears Catalogue,

a calendar with great photos

Flowers or a plant

a journal and pen

a puzzle

Dominoes

OR

You could be somewhat unconventional and start a real
conversation by bringing:

a photograph or two ( ideally from the past)

a newspaper clipping (controversial, or interesting)

fun and pretty stick and peel wall decals

some recipe cards (make it your goal to ask for
advice)

hand lotion (Try it right then and there)

Large type words to favourite songs or poems

a memory box of relevant items from the past, to
initiate conversation (something job or hobby related like a small tool,
screws, etc. or baking tools, baseball glove and ball, gardening tools.)

Magnifying glass and small box of items to observe

a tea set (to enjoy a proper tea time together)

a Guest book, for visitors to sign, or use as a
journal

a large print list of well known jingles or proverbs.
(The rain in Spain...)

variety of cards with self addressed stamped
envelopes. You could file them by the month that the event happens in.

If you come empty handed do not worry. The gift shop on
the premises offers snacks, drinks and note paper, even ice cream!

If all else fails, chances are you will find your first
conversation starter right at the door to the room! Some Long term care homes have a glass showcase just outside the resident's room that will give
you visual cues as to the person's interest. Start up a conversation based on
the items in that case. Someday ask for the key and together re decorate
the items in it. There are no rules about what goes inside it.

Next, enter the room and look
around, be somewhat snoopy, look for visual cues of interest. A knitting
project, a picture of cats, a forgotten cup of tea can cause you to think of
things to say. If the room doesn't provide enough articles for conversation then consider
leaving the room. A new conversation abounds with a change of scenery.

IF all else fails bring a real conversation starter
with you. Good ones are children, neighbours, and friends. The best by far is a
stranger! My sister brought a stranger once and the gossip never ended!

Four years ago yesterday, I drove my confused, frightened
and delirious mother to our local emergency hoping to for a simple cure for her
strange behaviours and the sudden change in her personality. Mom never came
back home to live with us again. As you know if you’ve read our story after a
very rocky road, she settled into a wonderful long term care home in our town.

No other time of year do I feel the pain of this experience
greater than at Christmas. It isn’t only that we lost the wholeness of my
mother, her support, stories and presence, but also, we lost our foundation.
The family home was sold, traditions were lost, memories could no longer be
shared – in many ways I felt like Christmas as I had known it was lost too.

For four years, I have found Christmas a sad time – a time
when the loss of my mom’s wholeness and the loss of other loved ones like my father
and in-laws was so strong it made my heart ache. Putting up the Christmas tree
was something that brought tears to my eyes. Buying Christmas presents and
preparing for the family meal felt more like a chore than a joy.

But this year, I noticed the healing is happening. There is
a little warmth and hope returning. It isn’t everything I want for Mom, but I
can enjoy taking part in the parties at her long term care home without wishing
and regretting she could be home with us. New traditions have replaced old
ones, babies have been born – nieces and nephews and best of all a new
grandbaby for me.

I guess my mom herself likely walked this journey when her
own parents and loved ones passed on and she became the mother and not the
daughter. She knew what I know today – that life goes on and even with all the
changes there is still beauty to be discovered even in the pain.

Wherever you are in your journey, whether you are surrounded
by the grief and loss, enjoying the moments or just beginning to see the light
again, I wish you all a very Merry Christmas and Happy New Year!

I try my best to write from a positive lens. Everyone in
this room knows that aging, sickness, dementia and loss is rotten. It doesn’t
seem helpful for me to state the obvious. So, as best as I can, I attempt to
find and share my observations from a place of hope.

That might be why there are gaps in between my writings.
Sometimes it is difficult to find the hope in Mom’s dementia. As we come around
the corner to Canadian Thanksgiving, sometimes it is difficult to FEEL
thankful.

While my mother’s capacity has diminished, for the most part
as she carries on she is content. She smiles and enjoys the people in the LTC
home, she enjoys music, exercise, baking, dancing, church services and Bible
studies, joking with the staff and visiting with family. She lives safe and
warm in her big bright private room and yet so much of her is gone. I miss
those parts of Mom so much.

In John Green’s book, The Fault in Our Stars, (without
spoiling the ending) one of the characters in the book reflects on what it
feels like to lose someone you love by stating, "The pleasure of remembering had been taken from me, because there was
no longer anyone to remember with. It felt like losing your co-rememberer meant
losing the memory itself, as if the things we’d done were less real and less
important than they had been before.”

I couldn’t have said it better myself!

The loss of Mom’s memories is also the loss of mine. Not a
single person in the entire planet shares the memories that I share with Mom.
She was there when I was born weeks early at 3 lbs 4 ounces and placed in an
incubator. She was behind the camera as I got on the bus for Kindergarten and
rocked me in the green chair when that mean girl on the school bus slapped me
in the ear. She was my biggest champion for years, my confident and friend and
the voice in my head. So many times I struggle to recollect a memory or think
to share something about a person only we both know – only to realize I have
lost the pleasure to remember with Mom – as if the moment never was.

Last week, when I visited Mom was a little edgy and
impatient with me. She was hard to find and I found myself too tired to really
look for her. But some days, I get a
gift.

Two weeks ago, my favourite smiling-red-head-singing,
Bible-preaching-volunteer was at the nursing home leading a Bible study and
sing-song. The songs she was singing so
joyfully were right out of Mom and my past. Praise choruses written in the 70’s
and 80’s and old beloved hymns that transported me to the days Mom and Dad
pastored the Monkton Pentecostal Church.

For just those few
moments we were transported. Mom sang every word of those long (for me)
forgotten songs at the top of her voice, smiling…and co-remembering with me.
The interaction so special I almost wanted to hold my breath…and then it was
gone.

I am not a wonderful daughter. I get tired, impatient, sad
and sometimes I even have to stay away. But, thankfully when I dust myself off
and try again – I blessed and for just that moment I "see” her (the Mom who has
gone away) ….and I remember who I am.

Some days, I can forget about the loss, beat back the longing to curl up beside my mommy and be the daughter and not the parent. Some days, when we visit we can just plain connect. One human to another.
Yesterday was one of those visits. I arrived at the Long Term Care home to find Mom awake and alert. Since much of her conversational skills are gone, talking about any one topic for more than a sentence at a time is difficult. But yesterday, there was a book.
The book on the table was three stories merged into one book with a scattering of drawings throughout. First it was pictures of lions and jungle animals, second of historical black and white photos of the Rockefeller family and finally drawings of people riding horses and carriages. Since reading the book wasn't a practical option, we started making up our own stories - silly stories at that.

In that moment, I was able to find her, connect with her. It was nice.

There are days, just like you, that I really wish this long journey could be over. I wish that Mom could be freed from this body bogged down by this horrible disease. But yesterday, I was grateful." No Mom, you can't remember your grandchildren, what you had for lunch or very much about me, we still can share the love of two people who share a beautiful history together.
Even if one of them doesn't remember it.

A very lovely relative of mine makes the long drive several times a year to visit my Mom. I'm always happy to hear she is coming - even though I'm not usually there to participate. It feels so right to know people who really "know"ť the whole Mom are spending time with her, that she is remembered and not totally lost. Her emails and conversations with me before and after her visits are always so encouraging.
After this time, she writes, "As always, I enjoyed the visit. And keep one thing in mind - it's much easier for me than for any of her children, since I come with no expectations, and no hurt if she doesn't know me or doesn't engage. I do fully "get" that piece!"

She so nailed it! Even when we love them, even when the visits are going well, even when there is not a crisis, visiting is hard for children and spouses.
It's why I seem to be able to finish every single dish in the sink, fold every towel in the dryer and reply to the most redundant email before I can get myself out the door to see her some days. (And some days are better than others as you know.) It hurts to see her live like this. It hurts to lose your mother a little more every day.
No matter how deeply I bury them, mask them or rationalize them away, I too have expectations of my Mom. I so want to be known, engaged, loved, mothered and remembered. The loss lives every day under the surface, even when I don't acknowledge it.
But, Mom and I do have good visits most of the time but the best ones happen when I too come with only one expectation and that is to make a connection.

Some days those connections are more complete than others. Some days that connection is full conversations, laughing, dancing and singing. Other days, it is simply the knowledge that we held hands and that possibly I was able to bring a little comfort and dignity to her on a difficult day.
Those connections, no matter how difficult are a beautiful gift for which I am truly grateful.

Dear Mom,
Well, I just wanted to write to tell you that you became a great grandmother again. Little Grace came into the world on Mother's Day morning making me a grandmother for the first time and I am certain now I will never be the same!
It makes me a little sad that I can't share this experience with you fully, I am not sure how many times I've told you my daughter (your grand daughter) is pregnant - lots anyways. At this point although you recognize my kids, you can't seem to make sense of who everyone is anymore...but that's ok.
Still, though I am happy. Becoming a grandmother has made me remember things I had almost forgotten about you. As I come alongside and support my grown daughter, stories of you come flooding back. I remember how you loved, encouraged and took care of me and everything so I could just learn how to nurse the baby and get my confidence. You were a great mom to me. You are a great mom to me - even as you slip away.
I am so thankful for you!
Love you,
Sharon xo

There's a lot of things being written and shared in the news about seniors and the medications they are taking in long term care. It is hard to know what is true and what is not?
As I have mentioned in our story, three and a half years ago when my mom was first hospitalized, she was living the "dementia"ť story: fighting delirium, paranoid, hallucinating, strapped to an acute care bed and taking a collection of drugs I didn't understand. We had no family doctor, no diagnoses and no hope.
As a partner in care, one of the areas where I have felt the most powerless and uniformed is surrounding my mother's medication and to make things worse, I just have click on Google news to find statements like this from the Toronto Star:
"Ontario nursing homes are drugging helpless seniors at an alarming rate with powerful anti-psychotic drugs, despite warnings that the medications can kill elderly patients suffering from dementia. A Star investigation has found that some long-term care homes, often struggling with staffing shortages, are routinely doling out these risky drugs to calm and "restrain"ť wandering, agitated and sometimes aggressive patients."

ťIf I had read these statements in the early days of mom's hospital care, I would have believed it without question - in many ways, it was true. Medications were not explained to me and questions I raised about her slurred speech and stoned-out state were silenced with the answer: "You don't want her to fall and break her hip do you?"

I felt my hands were completely tied.
This is the condition in which my mom remained for three months until finally we were able to get her a psycho-geriatric assessment by Providence Care. Within one month, mom's medication was corrected, acute care issues were addressed and my mother was a completely different person. She was walking around unrestrained, (not the same woman she was before the dementia) but alert, funny, calm, more rationale. The change was so drastic, we honestly felt like she'd been brought back to life.
Today, she lives in a long term care home, under the care of a knowledgeable doctor and is still receiving the support Providence Care and I have come to appreciate the place that the proper medications - including anti-psychotic - play in my mother's life.
The newspaper's inflammatory language and the implication that seniors in long term care homes get doped up every time they get a little cranky, don't exactly paint the whole picture.
What the general public doesn't know is how ugly an episode of delirium and hallucination for a person who lives with dementia can be. (I certainly had no idea.)During some of my mother's darkest moments while in long term care, she lived in a 24-7 state of panic and terror that everyone was trying to kill her. She could not be calmed, wouldn't eat, drink or sleep and was suspicious of everyone and everything. She was desperately and successfully trying to escape outside in the middle of the winter. Not only was she harming herself but was striking out in self defense to anyone who got near her. The last thing on my mind was the convenience of the long term care home or even the other residents, it was to bring peace back to Mom.
Part of what brought her back and keeps Mom from staying like this (I believe) - is the proper distribution of medications that include anti-psychotic drugs. Through the careful administration of medications and behavioural support techniques, most days, Mom is calm, active and alert.
I am not naive to think medications are never misused or mistakes never happen, but the truth, I believe... lives somewhere in the middle.

So, what would help us as family members and care partners? While I realize it isn't possible for our parents/spouses to be actively involved in their treatment,We need to be. This would not only prepare us when others come to us with misinformation, but it would also give us the choice to be involved in our own care choices.
I believe if we knew more, there'd be less exaggerated news reports and hysteria and the care we'd receive would be truly person and family centered.

Two years ago, I posted the below article: Birthday, Dementia Style. It is hard to comprehend that here we are two years later in almost the same spot. Tuesday my mother will turn 85 years old and while it is not how we imagined celebrating her 85 years of life, tomorrow my daughter and I will visit with a small cake a practical gift and share what remains: our love. Here is a re-post of that blog from 2 years ago:~Sharon
Birthday, Dementia-style

Sunday was my mother's birthday, Easter Sunday.
How do you plan a birthday celebration worthy of 83 years, for a woman with dementia?
The answer is you don't.
Last year at this time my mother was still in the hospital fighting delirium and paranoia. Determined not to let a little thing like dementia and psychosis ruin her birthday (can you say denial?) I planned a big family celebration. All available family members gathered in the meeting room down the hall from Mom's room, complete with cake and decorations. The only thing we didn't have was Mom. In her fragile state, the whole thing left her overwhelmed. She wouldn't open her eyes, talk to anyone or get out of bed.
Not one of my best parties.
So, this year family members wisely decided to visit Mom in waves throughout the week offering their own congratulations. Still, I wrestled with the urge to make it special - to make it the same as it was before Mom had dementia.
Walking through the department store searching for a gift for her I pondered this very thing.

What do I buy for this new version of my mother?

Should I buy her a picture for her room? - No, changing her room disorients and confuses her.
Family photos? - No, the family photos she has are stashed away in her cabinet. She can't remember who all the grandchildren are (since they keep changing) and looking at them frustrates her.
Special mementos? - No, they would be stolen.
Technology? - No, it will start a fire if it is plugged to the electrical socket.
I could take her out? No, She's using a walker now and out-trips take more out of her than they used to. Several weeks after I take her out, she puts her coat on each time I visit, thinking we are going out.
And I realize I am trying to celebrate a personality that no longer exists. This is birthday dementia style.
So, we begin again. We simplify, we downsize and we stop trying to make it something it is not. We replace the big family dinner -complete with the roast and gifts - with a small cake, a big musical card and a beautiful bouquet at nursing home table.
But the one thing that remains and always will remain - is love.

Mom's dementia and life at the nursing home feels pretty normal now. The shock and surprise of the disease has lost its sting. My mission has gone from rescuing her from crisis to seeing that she lives out her days in safety - feeling loved and affirmed with her dignity intact. Most days I can live with that. But, then something happens that reminds me how sad it all really is and how much I hate this disease!

Today is one of those days.

Today I learned one of my mother's best friend's husband just passed away.
My automatic reaction was: "Oh dear, I have to tell Mom"ť and then I remember. First, I can't tell Mom because it is possible it might upset her, triggering responsive behaviours. Second, there is a good chance she might not actually remember the people I am talking about. She hasn't seen them since her life was hijacked by dementia.
But even more it reminds me that "that"ťmother is the loyal and laughing friend who loved and mourned with people - is already gone. How do I mourn a person who is gone yet present? It reminds me of the one thing that makes my heart ache is that there is no funeral for slow death by dementia. There is no joyous celebration of life for people who are still here.
It makes me angry too. I can't help but feel my mom is getting ripped off. This women who spent her whole life loving and serving others dies a little every day right before our eyes. By the time, my mother breathes her last, she will have actually been gone for years. People will tell me that it is for the best - and they will be right.
So today, please join me as I grieve the mom who is gone and love the mom that remains.

Mom's dementia and life at the nursing home feels pretty normal now. The shock and surprise of the disease has lost its sting. My mission has gone from rescuing her from crisis to seeing that she lives out her days in safety - feeling loved and affirmed with her dignity intact. Most days I can live with that. But, then something happens that reminds me how sad it all really is and how much I hate this disease! Today is one of those days. Today I learned one of my mother's best friend's husband just passed away.
My automatic reaction was: "Oh dear, I have to tell Mom"ť and then I remember.
First, I can't tell Mom because it is possible it might upset her, triggering responsive behaviours.
Second, there is a good chance she might not actually remember the people I am talking about. She hasn't seen them since her life was hijacked by dementia.
But even more it reminds me that "that"ť mother is the loyal and laughing friend who loved and mourned with people - is already gone.

How do I mourn a person who is gone yet present?

It reminds me of the one thing that makes my heart ache is that there is no funeral for slow death by dementia. There is no joyous celebration of life for people who are still here.
It makes me angry too. I can't help but feel my mom is getting ripped off. This women who spent her whole life loving and serving others dies a little every day right before our eyes. By the time, my mother breathes her last, she will have actually been gone for years. People will tell me that it is for the best - and they will be right. So today, please join me as I grieve the mom who is gone and love the mom that remains.

The Lived Experience Cafe: Learning from the experiences of those affected by dementia and other related diagnoses. Come share your suggestions for change.

I know it has been awhile since I've shared on here, I've been working on something and it is finally ready!

In the past few months have had the privilege of meeting or talking with over 80 persons affected by dementia ďż˝" both caregivers, friends/relatives, adult-children, and persons in the early stages of the disease as part of the Lived Experience Network project. So much valuable information for change and passionate stories have been shared.

Thank you!

I am very pleased to inform you that March 1, 2014, we are launching the "Lived Experience Caféâ€ť at www.dementiacrossroads.ca. This online space is for you to leave your advice and suggestions for change on various discussion forums and to participate in Live Chat Events. The date for the first Live Chat event will be announced soon.

Special thanks to Dr. Dallas Seitz for letting us piggy-back on his project Dementia Crossroads and to share his website. The rest will be coming soon.

Some of you have asked what I am doing with all the information I collect. Firstly, I have been able to be part of Process Planning and Guiding Coalition meetings with Behavioural Support Services of Providence Care, sharing your observations as they relate to the creation and development of new services. I have also served on a review panel for behavioural support plans that are being created across the province. Secondly, I just submitted a preliminary report to our team leaders Kathy Baker and Dr. Ken Le Clair, detailing the reoccurring themes I have gathered in our conversations. A complete report will be submitted to elder health care leaders across the South East region later this Spring.

So far, I have connected through face to face meetings and telephone conversations with people from Brighton, Belleville, Trenton, Frankford, Belleville, Perth, Ganonoque, Kingston, Bancroft and Prince Edward County. In the next two months, I am very excited to be visiting groups in Madoc,Tweed,Smith Falls and Brockville. The phone calls and emails come in every week.

I know how much the support I find here on www.mymotherscaregiver.com means to me. It is my pleasure to be able to come alongside and develop another such community - one designed to help make change for seniors in South Eastern Ontario. How exciting!

I look forward to speaking with you on the Lived Experience Café at www.dementiacrossroads.ca. Please come and join up and start the conversations rolling.

In my position as the Lived Experience Coordinator, I've had the privilege of meeting some amazing caregivers, as they share their stories and advice to help improve elder care supports and services in South Eastern Ontario. Recently, I met Ryley who for many years has been responsible for both a father and mother dealing with Alzheimer's. After hearing some of the lessons she has learned in her journey, I asked if she'd be willing to share some of her tips with us. Thank you Ryley for reaching out to others who are carrying such a heavy burden and giving them some tips to make that load a little lighter.

Things You Can do to Improve Quality of Life While your Family Member is in Long Term Care

By: Ryley

Firstly, let me say that when I ventured tentatively in to visit my mom in the long term care home for the very first visit I was sort of scared and quite nervous, learning the door codes, worrying about other residents trying to get out the door and unsure where to go. Having dropped my mother off days ago and I had not even gone inside with her! I simply had lied to her about why she was going there and I drove off! I was freshly grieving the death of my father and some days wondered just how clearly I was thinking. So, when I finally made my way into the building and I suddenly rounded a corner and found my mom walking away from me, she turned back and looked up at me and she said "YOU can just turn right around and go back out.” Well, to say the least my heart dropped- but I persevered and we have such great visits and are building great memories together. The reasons we have such great visits is that I work hard at it and here are some ways that I do that:

I ensure that the Nursing home knows all there is to know about my mother:The Alzheimer’s society provides a great booklet that you complete about your parent and you then provide a copy to all caregivers, providing them with everything they need to know about your family member. This booklet addresses things that matter like how to calm your parent when upset, what their abilities are and a little about whom they were and what they are like etc. When I delivered my booklet to the nursing home they were SO excited and pleased to have all this info at their fingertips to share easily with staff. Such a great idea!!

In addition to that, I give caregivers a cheat sheet, with some of the stories that mom likes to tell over and over, all they need is enough info to prompt her to tell the story once again.

Copy activities that the nursing home is offering: Our nursing home offers a program that is set up like a nursery with life like dolls. For me that meant buying my mom a second hand baby bassinette to put all her stuffed animals into. What caught me off guard was that she thought I was pregnant and offered me pregnancy advice and yet at the same time she gave me heck for making a mistake in life!

They offer a gardening program, so I asked to access the large table of plants one on one with my mom and she enjoys deadheading the plants and transplanting snips of plants.

They offer a cooking program so I access the kitchen and although mom has little interest in cooking we have had great success when I bring all the makings of a sandwich in various containers and we enjoy making sandwiches together.

They offer music often so I purchased a child’s MP3 player. I found that if you buy things in the children section they are easier to use. The one I bought called the SWEET PEA will turn on by pressing ANY button at all and it shuts off automatically and it comes in a hard plastic indestructible case that is easy to hold and easily labeled with very few buttons. You can load it with your choice of songs from the internet and I found this to be an invaluable toy when we were sitting in waiting rooms for various appointments. My dad would be happily listening to his favorite comedians like the Smother’s brothers or Abbot and Costello or he was singing out loud (at little too loud at times) to his favorite oldie songs.

They offer a folding program, so bring things to fold, which can be as simple as Kleenex or I have purchased facecloths at the dollar store. Once we have them folded I take them to the bathroom, give them a good shake out of sight of and I bring them right back as if I have a new stack to fold.

Get the email for the activity coordinator so that you can develop a relationship with her and you will then be able to remind her to remind your mom to attend activities and between you and her you will be able to tag team your mom into attending more events and activities and next thing you know the activity coordinator is emailing you suggesting your mom be a part of something that you may not have even thought of!

Outside the room each resident has a glass box or memory box designed to keep special items in that can indicate to staff more about my mom and her past and it often will provide a source of conversation for the staff person but my mom and I like to change this box with the seasons by purchasing dollar store items and spending an afternoon decorating the shelves.

Ask the nursing home if you can put up a bird feeder outside the window. We have done this and many other residents are actually able to see it from the kitchen and the second floor so we are providing entertainment for many.

IF you really want to accomplish something such as a hair appointment or ensure success at attending an activity I phone her prior to remind her. If you don’t have a phone, remember that nursing homes are obligated to provide the use of one. My mother’s home involves the staff carrying cell phones for work and they have always been willing to use their cell phones to allow me short communications with my mom.

Purchase a phone that will be most easy to use as she progresses. Go straight for the phone where you can put names on the phone and yet she can still dial numbers. Forgo caller Id and message machines. My mom is at the stage where she just pushes a name, any name at all and she never knows who she is going to get which is just fine.

SKYPE: SKYPE is something we do weekly with family out of town. Mom calls it the "tv computer thing” and she requests it often. At this point she is able to walk around with it and brag and introduce her kids to whoever is in the hall! Sometimes we creep family on facebook to see what they are up to and to see all the pictures they post.

Magazines: I order magazines vs books, as the ability to read and retain diminishes. Short stories are endured. I find Reader’s Digest is just perfect but picture books are also very well liked.

Private Care: IF you can afford a private caregiver, even for just an hour visit once in a while I find that I can return to being "a daughter” again even if it’s only for a short while. For me, personally the biggest benefit I got from having a caregiver in place prior to nursing home placement was that the caregiver was able to greet my mom on her arrival the very first day, and when I was asked to leave she was able to stay and be my eyes and ears and with texting she was able to give me great comfort. Another benefit is that when a illness or contagious outbreak occurs on the ward, the first thing the home will often do is limit resident contact by cancelling activities for as many days or weeks as necessary. By having private care staff in place, I found that they are willing and able to visit during these times (when I was not lol) and they could provide my mom with activities to keep her entertained during these times.

Handicap Sticker: I keep mom’s handicap parking sticker in her chart at the nursing home so that any family member taking her out can access it.

Two is Better Than One: When you purchase an item that is a favorite and would be sadly missed if it was to go missing and lots of things go missing, then make sure you purchase TWO not just one and keep the other one handy. We found that some of mom’s very favorite things would actually cause her stress about them going missing and so we resorted to moving favorite things up high. We were also advised that the light fingered often will choose to remove items lying around vs on a shelf. We have two TV remotes. You may not need two purses but having two wallets has come in handy! I purchase them at the dollar store. I have resorted to several pairs of glasses and the optometrist will give a discount and not even bother asking for an appointment which is nice. A fellow resident liked to brush his teeth in mom’s bathroom and so we kept several toothbrushes on hand.

I Know her favourite Tv Channels compared to my provider’s tv channels so that I can phone her and guide her to watching a favorite or interesting show. I keep a daily calendar of shows that might interest her.

Buy a label maker for labeling knickknacks, stuffed animals, anything that is not tied down!

Photographs: Take a picture of favorite items for when they go missing.

Batteries: I keep hearing aid batteries on me, it always seems to be that when we are out that the batteries suddenly quit.

Choose a hiding spot in her room (up high on a bathroom shelf) works well for me, and use it to put things for other family to access such as nametags for her clothing, should they wish to iron on their own label. (the laundry service at the home will provide the labels)

Buy fake wedding rings and exchange the real ones for the fake ones (should family or your mom be upset the day they go missing!)

Taking in Food: It is great to enjoy some takeout food together or a snack you have made, BUT never leave more food in the room then you can eat during your visit as I came close to inviting a case of food poisoning!

I try to get mom a "job.” They say a sense of purpose goes a long ways towards having a long life. She used to deliver the seniors magazine within her apartment building, so I have enquired about her delivering mail, the activity calendar of events or the newspapers (with assistance of course) She has this idea that when the doors to the courtyards are open then they should have an OPEN sign on them. I pretty much ALWAYS pursue ideas that mom suggests. I find that when she is advocating for herself then I need to be paying close attention as this is her way of expressing her needs. I looked into purchasing an OPEN sign and she has volunteered to put the sign on the door (with assistance obviously) although we never did get around to doing that.

Keep a bag packed for outings (it might contain extra puffer, Kleenex, water bottle, hearing aid battery, sunglasses, change of clothes, wallet,) I keep a rug in my car to cover my seat with in case we should ever have an accident (the bladder kind). While you are at, you may want to also have a small bag packed at home of your own personal items that you would need to get you personally through any emergency visit where your stay is extended IF the nursing home is not in your town.

Post Signs: When other residents came into her room uninvited we posted a large "DO NOT ENTER” sign and a large STOP SIGN as a visual cue for others.

Whiteboard: My mom was used to having a whiteboard prior to her admission so we bought the peel and stick kind at Office depot and put it on the back of her door. We found it was best to just record the times of events that interested her vs putting ALL the activities the home offered on it.

Everything in it’s place: I TRY (Haha) to keep things in the same place and I FOCUS on what they look like so that when she calls me looking for something I can respond "chances are your glasses are in the blue eye glass case in your top drawer. Knowing that the call bell has an "orange” button on the end of it to push is very helpful! Knowing that the tv remote has a POWER button vs on/off is helpful when guiding her to use it.

Hand Held DVD: Purchase a small handheld DVD player, you can set up a movie and walk out and you just recharge the machine next time.

Notes: I post large print notes on the walls of my mom’s nursing home that say things like "the nurse can be contacted 24hrs a day, Please do not hesitate to use your call button to call a nurse at any time” My mom would respond well to notes, and reads them over and over so an effective way to get a message across or a reminder is to write her a note. I even ask Doctors to do the same. She pays more attention to notes written on prescription pads. Eg Shirley I need you to do your best to eat more meals in a day. Because she likes notes so much a diary and a sign in guest book are some of her favorite things. And one that says "Shirley wears hearing aids!! Please ensure they are IN! AND working!

Optometrist Labeling: I had an Optometrist label eye glasses with name and phone number for free. I ended up also using a bright nail polish on the arm of the eyeglasses so that I could spot them quickly.

Happy New Year to all of you from My Mother's Caregiver! Looking back over 2013, I have so many things to be grateful for. This community is one of the things for which I am so very thankful. Last year there were 3,800 views on this site. It just makes my heart happy to imagine that people came online looking for answers, support and understanding and they found it here.
In celebration of this backward's glance, my stats show that one blog post in particular was a favourite. On June 18th, "In the Beginning" had 82 views in one day. (ahhh thanks guys!)
I have decided to re-post it below. Perhaps, if you've never read it, you'll get a chance to now. If you did read it, I hope you'll enjoy it again and maybe even pass it on to someone else.
Thank you for supporting me in my caregiving journey. I trust we've made each other's load a little lighter and will continue to do so in 2014.
Here's: In The Beginning

Two and a half years have passed since we began our journey with dementia and caregiving.Sometimes I forget.Sometimes I forget the shock! I forget how frightening it was to watch my mother hide from me, convinced I was trying to poison her, steal her money or drown her in the bath tub. I forget feeling angry and tired and not liking this strange, paranoid and aggressive woman who had taken over my kind and gentle mother's body. I forget how guilty I felt and torn between everyone's conflicting expectations. I forget how uninformed I was and how powerless I felt to find that information.

The more Mom settles into her life in her long- term care home, the farther (thankfully) those memories live from my daily thoughts.
But then, I meet someone (maybe like you) that is in that horrible "In the beginning" stage of your journey and I remember. Recently, I visited a family like this and was amazed that everyone had the same look in their eyes - that shocked look of someone experiencing a deep trauma - and I remember where I've seen that look before; in my own mirror.
The good news is there really is help. There might not be a miracle cure, but there are answers and there is support. Even as things get worse - things can get better too.
Take some time and stroll through the pages on this site. I am not selling anything. Unfortunately, the health care world is a maze, but there are answers and there really are wonderful people out there who want to help. So, when one door gets shut, don't be discouraged, keeping knocking and searching.
Read the steps in these pages and posts to find answers, visit the links - all of which have good easy to read information. Contact your local Alzheimer Society. They will offer you books, information, conversation and support.

You don't have to wait to know what the problem is to reach out for their support and counsel. They won't judge you or think you are over reacting and they won't charge you any money.
It is my opinion, that this "Inthe beginning" is the worst stage of caregiving. There will be better days coming.You are NOT alone.

Three years ago this very weekend, my frightened and delirious mother arrived - bags packed, house sold, all the way from South Western Ontario to move in with my equally frightened family.

Only a few weeks earlier she had been driving, cooking and paying bills. Now she couldn't decipher the hot or cold water taps, was wildly paranoid and didn't know the difference between night and day. That Christmas her gifts sat unopened under the tree while she sat (often restrained) in a hospital bed. My family and I were guilt ridden and had no idea where to find answers or support. Looking back, I can still hardly believe it. My chest tightens just remembering those heart breaking weeks and the frightening months that followed.

None of us would have believed she was at the beginning of her dementia journey. None of us would have thought three years later she'd be living in our town - but not our house - in a long term care facility. As I sit here writing this it occurs to me, I'm in the same family room that three years ago was set up so nicely like a little bachelor suite - housing her bedroom furniture a few living room pieces, TV, stereo and a small kitchen table. Today the only signs that she was ever here are her two chairs, a figurine on the fireplace mantle and the lingering sense of grief and loss.

It is definitely not my favourite anniversary!

Yet, the experience, like any difficult time, has forced me to become part of a human community of others who have experienced loss. I now notice people and situations I wouldn't have noticed before. I understand - just a little - how scared, sad and lonely other people feel when they lose a loved one slowly to dementia or similar diagnoses. I notice the widower, the young wife of the husband with cancer and the weary caregivers.

It makes me want to reach out, to take a hand, to share a story and to love others. In the end, I think that is exactly what my mother would have wanted.

Merry Christmas to you and a Happy New Year! May we all be reminded to live and enjoy the moment we are in and to be mindful of our many many blessings! Wishing you all the best.

I still remember the night we decided to take my delirious mother to emergency. Convinced there was no other option and no cavalry coming over the hill to save us, we really didn't see any other options. That's why I was so excited to see the development of this latest resource for caregivers. If that night, I could have picked up the phone and said, "Hey, this is what's going on. What do you think?" Wow, that would have been really nice.So, it is with that sentiment that I share this brand new resource.

Help really is only a phone call away:

"Caring for someone with dementia is a 24-hour a day job” say the Alzheimer Society of Ontario and the Ontario Dementia Network Toronto, ON, October 8, 2013 – The Alzheimer Society of Ontario and the Ontario Dementia Network are working with Telehealth Ontario to help family caregivers prevent crises when regular services are closed. Funded by the Ministry of Health and Long-Term Care, Telehealth Ontario resources have been reviewed and strengthened specifically to support family caregivers of persons with dementia. These services will help to provide better care to people with dementia being cared for in their home by caregivers. Telehealth Ontario will connect people from across the province with specifically trained nurses to offer dementia support, advice and referrals 24-hours a day, seven days a week.

"Family caregivers deliver the vast majority of care for the 200,000 persons with dementia in Ontario in their own homes,” says Kathy Wright, CEO of the Alzheimer Society of Ottawa and Renfrew County and a Co-Chair of the Ontario Dementia Network. "With agitation, confusion and wandering often occurring in the early evening, Telehealth Ontario’s after-hours support is a vital tool for caregivers managing stressful situations when organizations like the Alzheimer Societies are closed.”

"Individuals with dementia are twice as likely to visit emergency rooms and if admitted are much more likely to be stuck in hospital, blocking beds while awaiting long term care,” explains Dr. William B. Dalziel, Professor of Geriatric Medicine at the University of Ottawa and Co-Chair of the Ontario Dementia Network. "Telehealth Ontario adds to the resources so needed for individuals with dementia and their caregivers. Research shows that caregivers with education, counseling and the availability of Telehealth Ontario services could keep their loved ones with dementia at home 1.5 years longer.”

"We’re strengthening Telehealth Ontario services in order to provide more support to those caring for loved ones with dementia,” says Deb Matthews, Minister of Health and Long-Term Care. "By supporting family caregivers at home when they need additional help, we are helping to provide the right care, at the right time and in the right place.”

Caring for a person with dementia at home is a difficult task and can become overwhelming at times. "My personal ‘melt downs’ were often during long weekends when I did not have access to agencies….

"Some of my darkest memories are of those ‘after-hours’ needs,” shares a family caregiver.

Telehealth Ontario nurses will receive targeted training in dementia protocols to support the service. During regular business hours, callers will be referred to the local Alzheimer Society for help. Access to after-hours services for dementia caregivers is available by dialling Telehealth Ontario at 1-866-797-0000 after regular business hours, and during weekends and statutory holidays.
"Telehealth Ontario is helping build a robust province-wide support system specifically targeting the information and support needs of the families and friends who are currently spending 100 million unpaid hours caring for Ontarians with dementia,” concludes Kathy Wright.

For more information, or to book an interview with the Alzheimer Society of Ontario, the Ontario Dementia Network or Telehealth Ontario, please contact:

About the Alzheimer Society of Ontario
The Alzheimer Society of Ontario and its network of local Societies across the province offer Help for Today through programs and services for people living with Alzheimer’s disease and other dementias and Hope for Tomorrow…by funding research to find the cause and the cure.www.alzheimerontario.ca

About the Ontario Dementia Network
Established in 2009, the Ontario Dementia Network’s mandate is to provide leadership to the regional dementia networks in Ontario in the development of a comprehensive and well developed system of service delivery, education, and public policy in the field of dementia.http://www.akeresourcecentre.org/DementiaNetworks
About Telehealth Ontario
Telehealth Ontario is a free, confidential telephone service Ontarians can call to get health advice or general health information from a Registered Nurse. http://www.health.gov.on.ca/en/public/programs/telehealth/

Dementia and hope don't really go together.
As I mentioned in my last post, I've been struggling a little lately coping with my Mom's dementia. Nothing has really drastically changed, but in our latest visits she has been more distant, less aware and harder to find. I feel myself growing discouraged, fatigued and less hopeful.
In fact, I think the word "hope" is the issue.
In every other area of my life - with my work, my children, my friends - even if things are not the way I want them to be, there is something to look forward to. I can hope. But, when I look at Mom and where she is going - there is not much to hope for - I see nothing in her future but more layers of loss.
SO, today I am doing something to shake myself out of this funk:

I am practicing gratitude.

Maybe it will help - here's hoping. Maybe you'd like to join me. Although, Mom is not how we wish she could be, right now in this moment, there are things about her for which I am grateful.

1. I am totally and completely grateful for the staff in her long term care facility. Their care is person centered, when they speak with my mother - I can tell by the look in their eyes, that they "see" her - not just a bothersome old lady. They are funny, warm and approachable. They welcome my questions and concerns. When Mom is "off" they notice and are pro-active. Because of them, Mom is warm, well-fed, and safe. I am so grateful.

2. I am grateful for her big sunny single room with the little love seat for two and for the moments we can sit and cuddle in privacy and quiet.

3. I am grateful that her eyes still light up and a big smile crosses Mom's face almost every time she sees me. She may not be exactly able to identify me every time - but she still knows me, loves me and feels loved in return. I am so grateful for that.

4. I am grateful for all the volunteers who come in and talk with Mom, sing, perform jamborees, preach and pray with her. I am grateful for the other residents who she enjoys their company and friendship - even her limited way - and the family members of other residents who have taken an interest in my mom. Thank-you!

5. Most of all, I am grateful that even though it can be heart breaking, I have the gift of more time with Mom. I really am thankful for those moments of connection, love and intimacy. They are a gift and I am grateful for them.
Maybe, I won't find hope in my gratitude, but I might just find joy. :)
~Sharon

As the evening winds down and I wrap up the last few items of the day, I close that last email, put away that dish and throw a load of towels in the dryer, I feel that old friend of mine (named guilt) whispering in my ear, reminding me that I am disappointed in myself ("You didn't visit Mom ALL week!") ťI sigh a little and try to brush it off with rationalizations, "but we had extended family here all weekend, dinner at my daughter's on Thanksgiving, (oh man, I didn't visit her for Thanksgiving!!)

I am working full time right now, I had meetings to go to and groceries to buy!ť
But, I know I could have made a bigger effort, popped by for even twenty minutes. I thought about her every day. She's been a little off lately, having dental problems that are causing her pain and some behaviours. Arrangements have been made to deal with these issues, but it takes time and we aren't sure how she'll react to it all. Thinking about it and seeing her makes me worry and worry makes me so tired.
The truth is sometimes it is SO HARD TO VISIT. Not to say it doesn't warm my heart to see her eyes light up, I still love her so very much. But, most days it takes a great deal of energy, heart and stamina to enter that home, look past the loss of who she used to be and try to find my mom inside the dementia. Sometimes it is a bigger load than I want to carry.
But, I'm guessing I am not the only person in the roomwho feels bad for not doing more and I am definitely not the only person who feels guilty. So let's make a deal, I'll forgive me and you forgive you. We'll realize the bad guy here is not us but this stupid disease. We'll take care of ourselves. Get a good sleep, do our best and get up and go again.

I wasn’t sure how much I wanted to share about my latest twist and turn. I wrestled with mixing my professional-self and my Sharon-the-blogger-self until I finally decided – “Why not?”

Last month, I signed on for the task of creating a Virtual Lived Experience Network, working with the Alzheimer Societies for the South Eastern Ontario region. Without getting into the nitty-gritties, I am being contracted to help create a voice for people living through the experience of dementia and other responsive behaviours (either themselves or as care partners).

As I said, this is a very funny twist and turn in my life. It is also an emotional one because for so many long months when my mother struggled with those early stages of dementia, delirium and her future was unclear – I had no voice at all…and she most certainly didn’t either.

I don’t think it is possible to overstate how vulnerable a time that was. It is one of the most frightening memories I still carry from our ordeal – that no one seemed to be listening.

It is with great optimism and perhaps a sprinkle of idealism, that I now believe: people really were listening.

It is true our medical system is a confusing maze. At times health care services don’t work together or share each other as resources. Families are left standing the the hallway shaking their heads, not knowing what door to walk through. But, the more involved I get, the more I see that people are listening. More and more services are collaborating, working together, and doing their best to offer person centered and family directed care.

I was able to attend a local example of this recently at the unveiling of a new partnership name and logo for “Cross Roads to Care” – the co-location of the Alzheimer Society of Belleville, Hastings, Quinte, Community Care for South Hastings, Providence Care and VON. In December, all theses services will be under one roof in the Bayview Mall in Belleville, Ontario.

Translation: when a person in need of care or their family shows up looking for services, there is a good chance they will go to the wrong door first. Before, these services would have to send them away – now they can re-direct them down the hall!

Imagine how much better of beginning this will give to people in need of care, support and answers. It makes me smile just thinking about it.

So, I’ve been a little busy lately. (Sorry for neglecting you). It is an exciting and humbling time, to be able to take a lived experience and personal situation so marinated in loss and pain and turn it to the greater good….what a blessing! (Mama would be proud.) So, Keep your eye out for the Local Resources Page. As I go along, I hope to add more local resources, encompassing not just my back yard, but the entire South Eastern Ontario region. I also hope to be able to add more information and resources that serve the entire province. Come back often and look around.

OH YAH!! and be sure to check out the 2014 Alzheimer Society of Ontario calendar. Mom and I are one of the families featured in it. (Which I think is pretty cool.)

What I have learned and continue to learn in being part of this online community, is that we need each other. We need to share our stories, listen to other people’s and support each other. It makes all our loads lighter when we do.

I’m not sure where the below words originally came from, I’ve read this and versions like it online before, but today I received it from my good friend Jeanette. The difference today was the timing, I really needed to read this today. Some days we need to be pulled back to the center and reminded that when it comes to being a caregiver – loving them really is enough. Enjoy and Be Encouraged! ~ Sharon

Did you see me today in our visit, when I sat beside you? Did you see me as you drifted in and out of sleep on the loveseat holding my hand? Your face smiled and you patted my hand, but your eyes were dull and far away and I wonder did you really see me?

I love the days when I visit and your face lights up and your eyes shine with recognition and (I like to think) remembrance. I love the days you are witty and playful – like the day you smacked my bottom after I kneeled over just a little too close to your reach – and your eyes dance like a naughty child.

I love the days that you drop your famous wise cracks and have the room laughing big and hard along with you. I love the days you’ve just got your hair done and look so put together and happy. I love the days you say my name, tell me you love me and we sit outside without a care in the world.

I love the days I show you pictures of people and places and you know, you really remember being at that place or with that person and you smile – really smile – even with your eyes and I think “she still knows…she still sees me.”

But, today was not that kind of day and I had to wonder – do you see me, know me? How much of me has been stripped away along with everything else by that stupid dementia? How much of it will be back tomorrow?

A great reminder sent to me from my friends Margaret and Alec. Too good not to share:

When an old man died in the geriatric ward of a nursing home in an Australian country town, it was believed that he had nothing left of any value.
Later, when the nurses were going through his meager possessions, They found this poem. Its quality and content so impressed the staff that copies were made and distributed to every nurse in the hospital.

One nurse took her copy to Melbourne. The old man’s sole bequest to posterity has since appeared in the Christmas editions of magazines around the country and appearing in mags for Mental Health. A slide presentation has also been made based on his simple, but eloquent, poem.

And this old man, with nothing left to give to the world, is now the author of this ‘anonymous’ poem winging across the Internet.

Cranky Old Man

What do you see nurses? . . .. . .What do you see?
What are you thinking .. . when you’re looking at me?
A cranky old man, . . . . . .not very wise,
Uncertain of habit .. . . . . . . .. with faraway eyes?
Who dribbles his food .. . … . . and makes no reply.
When you say in a loud voice . .’I do wish you’d try!’
Who seems not to notice . . .the things that you do.
And forever is losing . . . . . .. . . A sock or shoe?
Who, resisting or not . . . … lets you do as you will,
With bathing and feeding . . . .The long day to fill?
Is that what you’re thinking?. .Is that what you see?
Then open your eyes, nurse .you’re not looking at me.
I’ll tell you who I am . . . . .. As I sit here so still,
As I do at your bidding, .. . . . as I eat at your will.
I’m a small child of Ten . .with a father and mother,
Brothers and sisters .. . . .. . who love one another
A young boy of Sixteen . . . .. with wings on his feet
Dreaming that soon now . . .. . . a lover he’ll meet.
A groom soon at Twenty . . . ..my heart gives a leap.
Remembering, the vows .. .. .that I promised to keep.
At Twenty-Five, now . . . . .I have young of my own.
Who need me to guide . . . And a secure happy home.
A man of Thirty . .. . . . . My young now grown fast,
Bound to each other . . .. With ties that should last.
At Forty, my young sons .. .have grown and are gone,
But my woman is beside me . . to see I don’t mourn.
At Fifty, once more, .. …Babies play ’round my knee,
Again, we know children . . . . My loved one and me.
Dark days are upon me . . . . My wife is now dead.
I look at the future … . . . . I shudder with dread.
For my young are all rearing .. . . young of their own.
And I think of the years . . . And the love that I’ve known.
I’m now an old man . . . . . . .. and nature is cruel.
It’s jest to make old age . . . . . . . look like a fool.
The body, it crumbles .. .. . grace and vigour, depart.
There is now a stone . . . where I once had a heart.
But inside this old carcass . A young man still dwells,
And now and again . . . . . my battered heart swells
I remember the joys . . . . .. . I remember the pain.
And I’m loving and living . . . . . . . life over again.
I think of the years, all too few . . .. gone too fast.
And accept the stark fact . . . that nothing can last.
So open your eyes, people .. . . . .. . . open and see.Not a cranky old man .Look closer . . . . see .. .. . .. …. . ME!!

Please note, I will not be updating my posts regularly during the summer months – I am enjoying some holiday time with my family. Be sure to check out the archives and any of the information pages for elder care answers.

Two and a half years have passed since we began our journey with dementia and caregiving.

Sometimes I forget.

Sometimes I forget the shock! I forget how frightening it was to watch my mother hide from me, convinced I was trying to poison her, steal her money or drown her in the bath tub. I forget feeling angry and tired and not liking this strange, paranoid and aggressive woman who had taken over my kind and gentle mother’s body. I forget how guilty I felt and torn between everyone’s conflicting expectations. I forget how uninformed I was and how powerless I felt to find that information. The more Mom settles into her life in her long- term care home, the farther (thankfully) those memories live from my daily thoughts.

But then, I meet someone (maybe like you) that is in that horrible “In the beginning” stage of your journey and I remember. Recently, I visited a family like this and was amazed that everyone had the same look in their eyes – that shocked look of someone experiencing a deep trauma – and I remember where I’ve seen that look before: in my own mirror.

The good news is there really is help. There might not be a miracle cure, but there are answers and there is support. Even as things get worse – things can get better too.

Take some time and stroll through the pages on this site. I am not selling anything. Unfortunately, the health care world is a maze, but there are answers and there really are wonderful people out there who want to help. So, when one door gets shut, don’t be discouraged, keeping knocking and searching.

Read the steps in these pages and posts to find answers, visit the links – all of which have good easy to read information. Contact your local Alzheimer Society. They will offer you books, information, conversation and support. You don’t have to wait to know what the problem is to reach out for their support and counsel. They won’t judge you or think you are over reacting and they won’t charge you any money.

It is my opinion, that this inthe beginning is the worst stage of caregiving. There will be better days coming.

Sometimes, the change that comes with dementia is fast and furious leaving people spinning, but most often it is slow and sinister. I hate dementia.

This last year, the changes in Mom have definitely been there. but they were so subtle, so gradual – that I could almost talk myself into believing, “this isn’t so bad…maybe she will plateau and not disappear from us completely after all.”

Two things have happened lately that have burst that bubble for me, reminding me, she is slowly slipping away.Thankfully, they aren’t huge things.

The first thing, she has acquired a doll. She got it from the nursing home and it is her constant companion. This a very common and comforting thing for residents with dementia. I know “with my head” that this is not a big deal. She likes it. The doll gives her pleasure and something to care for and that’s what really matters ….right?

Well, I hate the doll. Firstly, because it is the size of one year old and just plain creepy looking with eyes that open and shut. Secondly, much of our conversations now are about the doll -or should I say “the baby” …what happened to her slippers and how cute she is. Mom baby-talks with it, has called it “Susie” and I have had to clean food of its face – so she’s also feeding her.

The real reason, I hate the doll … I mean Susie… is because it reveals a deeper slide in her mind, a more diminished stage of reality… a loss of who she really is. It makes it even harder for me to find her.

The second change is her memory. While she has been forgetting all along, those files from deep in her mind, could often be pulled up, dusted off and with some prompting recalled. She would always recognize people from her past, even if she couldn’t name them or put all the pieces together, you could see it in her eyes that she “knew” them.

A couple weeks ago, I saw that change for the first time.

A long time friend, from her old church moved to our town. I was so excited to think someone from her past would be near to re-connect with Mom. But, when this friend walked in the door, Mom turned to her with a slightly flustered look and said, “I don’t know you. I don’t remember you at all.” What a sucker punch, to think that the file wasn’t just dusty, it was gone.

But, before I could react, her friend just smiled and saved the day. “That’s ok”, she replied, ” I remember you.” She began to tell Mom all the things she’d meant to her and the things they’d done together. It was such a kind and generous gesture, I just sat and marveled. In that moment dementia lost and love won.

A few days later, Mom and I sat in the courtyard and I asked her if she knew my name. She hadn’t said it in long time. “Wanda?” she asked. “No, that’s your youngest sister, I am your youngest daughter – Sharon.” Mom frowned and apologized. “Sharon”, she repeated, “I forgot.”

The following blog is re-posted with permission from a blog I read a lot. Thanks so much to Elder Care Consultant for allowing My Mother’s Caregiver to share these and many other great tips for seniors and caregivers.

April 5, 2013

Aging Parents: Crisis Mode

Chances are the first time you’re asked to step in and help your aging parents it will be during a time of crisis. You may be setting in a hospital intensive care unit as you read this or your head may be spinning with bad news from your mom or dad’s physician. You may be making that frantic long distant trip by plane to be by their side; unsure of what you’ll find when you get there. I’ve been there both professionally and personally and I want you to know you are not alone and things will get better.

Tips for Managing

Don’t Panic: If it takes a state of denial or a quick call to your therapist or minister, don’t panic. Take a deep breath, focus on what’s in front of you and don’t get overwhelmed by the “what ifs”. You may be in a situation that is out of your control and it may take a few hours or days of simply putting one foot in front of the other before it all unfolds. Your mantra is “one step at a time”!

Manage What You Can: If you are just entering the world of elder care, you’re in for a big shock. Navigating the health care system is frustrating and at times you’ll feel like Alice in Wonderland falling down the rabbit hole. Manage what you can: call friends and family, identify your resources and support systems, confirm that the hospital has accurate personal information, keep notes in a journal. Manage what you can and know that it all unfolds in due time!

Educate Yourself: Don’t count on professionals to be transparent (more on this at another time). Whatever your situation, you want to make your decisions based in knowledge not fear. Ask questions, call local organizations (Area Agency on Aging or Alzheimer’s Association) and yes use the internet (with caution) to locate information. The information you discover now may come in handy down the road!

Be Aware of Emotions: Stepping in to your aging parent’s life during a crisis may trigger some emotional baggage for you. I don’t care how far you’ve moved or how much psychotherapy you’ve endured, your buttons are going to be pushed. You may feel like an angry teenager or helpless child. Acknowledge it, identify what you feel and save it for another day. Now is not the time to dredge up past grievances or issues. The next few days are going to be an emotional roller coaster; manage it!

Stay in the Moment: While it’s important to make decisions based on two steps down the road, it’s just as important to stay in the moment and not get caught up in the “what ifs”. This can create the type of anxiety that will paralyze you. Decisions are going to have to be made related to what’s happening now not two or three weeks from now. Managing your elder care crisis is a process that will unfold and stressing out over what may or may not happen is not going to help you or your aging parent. By staying in the moment, you focus on the important issues!

I hope these tips for managing your aging parent’s crisis have helped you in some way. I’ve been in your shoes and even with all of my experience and education it was still difficult. The fear, the anxiety and that overwhelming feeling of helplessness can really put you in a bad spot. Remember that everyone’s crisis is unique and unfolds differently; this too shall pass and you will survive.

Today I am sharing some information from Bayshore Home Health about a contest for Caregivers. Enjoy:

For All of You Who Go the Extra Mile

Bayshore Home Health, Canada’s largest national provider of home health care services, wants to acknowledge all of you who go the extra mile to care for aging loved ones, and let you know you are not alone. The commendable work you do is both recognized and appreciated. “Canadians are the quiet champions of health care. They are conscientious, and feel obligated to take care of their loved ones,” said Stuart Cottrelle, president of Bayshore Home Health. “We want these caregivers to know that we understand their situation, are well aware of the degree of dedication and time it takes, and are seeking ways to help them to share experiences and recommendations for the benefit of all”.

According to a recent study undertaken by Bayshore Home Health, Canadians who assist older loved ones with their daily living spend nearly 17 hours per week doing it, and it is costing them. It limits Canadians – 45 per cent said it prevented them from travelling, generally noting that it cuts into their time to pursue hobbies and other interests.

Forty-nine per cent of these caregivers would like professional help, and 64 per cent feel that those not in their position don’t understand the level of commitment it takes to be an unpaid caregiver for a loved one.

“It was staggering to discover that more than half of Canadian caregivers feel as though the responsibility of caring for a loved one has steered them from enjoying simple things in life like travel,” continued Mr. Cottrelle. “We felt AIR MILES® was the perfect partner to give something back.” Bayshore knows what you do each and every day to ensure your loved ones can age in dignity and comfort, so from March 26, Bayshore’s “Go the Extra Mile” Facebook contest will enable Canadians to nominate a caregiver they know for a chance to win up to 25,000 AIR MILES reward miles. The Facebook page also provides a valuable resource for unpaid caregivers to learn tips from professional caregivers that can help them continue to care for their loved ones.

To learn more, visit Bayshore’s Facebook page at http://bhhextramile.ca and find out more about the Go the Extra Mile contest.

Care giving comes in many shapes and sizes. Because I write from personal experience, usually I imagine I am speaking to the adult child of an elderly parent or the spouse of someone suffering with illness or dementia. But, this blog attracts all kinds of caregivers and loved ones.

The people who have written that most surprised me are those of you caring for a loved one with cancer or other life threatening illness – struggling with the roller coaster ride of hoping for a miracle and dealing with daily losses. So different, yet so similar.

That is why I decided to share this letter from my friend Brenda. Being my best childhood friend, I half lived at their house growing up. Brenda and her younger brother spent many hours in my back yard climbing our tree. While people grow up and move away, we have kept in touch. Over the past eleven years I have watched from the sidelines as Brenda’s heart ached for her brother and his wife who was battling cancer. Last week, she lost her fight. She was only 39 years old and leaves behind an adoring husband and three boys. Below is a letter Brenda gave me permission to share. This blog has always been about honest sharing of love, hopes and hurts, so I appreciate Brenda’s willingness to share in such a vulnerable manner. Whatever your story, I believe her words will challenge and encourage you to be honest, to embrace faith, hope and love and to cherish every moment. Be blessed. ~Sharon

“I have not kept many informed because we all believed that she would get her miracle and find a way to beat it.

For me she was the miracle.

To be strong enough to face everything with a smile and believe to the last moment that her time with Steve and their boys was worth every moment.I have never met a stronger person “wrapped up” in so much kindness. It sucks that cancer had to interfere.

Even though Jeanette has battled cancer for 11 yrs she “managed” very well up until Sat Apr 6. She was moved into hospice care and passed away Apr 10. The hospice facility was amazing – everyone was so kind and helpful. No “hospital smell or announcements”; it was as comfortable for everyone (as it could be under the circumstances). Each day following Apr 6 was a dramatic difference and part of me is glad that her “true decline” happened very fast.

She beat every set of odds for 11 yrs and besides the cancer treatments she “seemed healthy” and could be active in raising her family (they have 3 boys). She was so very strong and honest that they did not hide anything from the boys. No question was left unanswered.

The world would be a better place if more people could learn to be so honest with each other and to themselves.

Right now it just does not make sense. It feels wrong that someone so young and with so much more to do and offer this world could be gone.

But the message Jeanette left was that she never questions the gifts she received in life; that of her boys, a loving husband, supportive family and to be surrounded by a loving community. So why would she question the challenges God gave her to face.

We cannot know what is in store, but can believe that Jeanette is in a better place and she will be with you ever day.

Some days I want to reach out and connect to people and walk alongside them. Some days I am fired up about things I think just don’t seem fair or right. Other times, I’ve wanted to let you know what someone else is doing to help caregivers. It is hard to believe I have been documenting my mother and my journey since August 2011. Seinfeld would say it is a blog “about nothing.”

But lately, I feel like I have so little to say that hasn’t already been said.

Most often, I just plug along, day by day, just like you do. I visit my mother. I do most of the talking and try to get the basic sense of what Mom is trying to say. Most often, I just pretend. From what I can tell, just feeling heard and loved is enough for her. I worry when she is sick or falls. I see the residents around her pass away and I grieve – both for them/their loved ones and in advance for Mom, knowing that one day it will be our turn.

Most weeks, I get a phone call from the Nursing Home. Each time I see the name on the display a little shudder goes through me: Did she fall? Is she hurt? Is she sick? Is she acting out? But fortunately, lately, it is fairly ordinary stuff that makes them call and I am thankful.

Next week is Mom’s 84th birthday and soon she’ll pass her two-year mark living at the Nursing Home. It amazes me that her life has improved in many ways from those dark days we first signed the papers and drove away in tears. We felt so desperate we never would have imagined that (despite the fading of her mind and memories) that Mom would live a contented existence for two more years …any perhaps many more to come.

Dementia is a crazy thing. It just hijacks your life and you have to keep going. And so we get up and we go again and thank God for today.

Last month My Mother’s Caregiver was approached by someone from the Canadian Cancer Society about our blog. They liked it and were interested in engaging me to help them promote Colon Cancer Awareness Month this March.

I thought about it, and it seemed like a good fit for you, my audience. Why, do you ask?

Because often caregivers do not think about themselves first, rather they’re always putting others in front of their own needs. But, caregivers need to take care of their own health in order to be able to take care of others.

For example, did you know that colon cancer is the number two cancer killer in Canada and the US, yet it is 90% treatable when caught early? That’s why it’s so important for us to get checked before symptoms appear.

In 2012, an estimated 8,700 Ontarians were diagnosed with colon cancer and approximately 3,450 people died from the disease. In comparison, the only other type of cancer that claims more lives is lung cancer.

Getting checked for colon cancer could be as easy as taking an at-home stool test (also known as the fecal occult blood test – FOBT). And if you’re at high risk for colon cancer,talk to your doctor about other colon cancer screening options. High-risk individuals include those with a first-degree relative (parent, sibling or child) with colon cancer and other factors such as inflammatory bowel disease (ulcerative colitis or Crohn’s disease).

Almost two years have passed since my Mom entered the nursing home where she lives.

Those early days were pretty tough. Mom was terrified, paranoid and still battling delirium. I was terrified, guilt ridden and exhausted. But, when I think back on those days, it is the people who came alongside me that I remember the most. I have a collection of warm memories of my family, friends, church, nurses and staff holding me up during this time. But, the people that surprised me the most were the family members of other nursing home residents.

I still remember Mom’s second day at the home. Despite, the warm spring weather, Mom had parked herself in a seat near the door, wrapped up tight in a long coat and scarf – (I don’t think she was planning on staying). Knowing I had given my Mom the safest and most appropriate setting for her current circumstances, wasn’t much comfort that day. As I sat there fighting back tears, the warmest, kindest gentleman approached; a man whose wife was in the nursing home recovering from a stroke. His caring and quiet presence calmed both Mom and I.

He had that look in his eye that said, “I know your pain, you’re gonna make it.”

Over the next few months, other spouses and children also comforted and encouraged Mom and I – much more than they probably will ever know. There was the adorable Scottish lady who was always so happy to see me and share a hug and chat. (Visiting Mom was difficult then, she gave me something to look forward to.) There was the helpful son who faithfully visited his father every day. He did so much helping that I thought he was an activity staff for almost two months before learning he was a volunteer. There was also the tender, gentle wife of a man who had been hospitalized the same time as my mother. She and I had wept together in the hospital waiting room. She too was so kind and supportive to both of us. Often when I’d arrive she was walking the halls calming my frantic mother.

One by one, I watched these people lose their loved ones, the people they loved and dedicated their lives and time to. I think about them almost every time I visit Mom and wonder how they are coping and if they know how much their presence meant to me.

Lately, the gentleman is back. His wife passed away a couple of months ago and he comes in often to visit his wife’s old roommate. His loss and pain is still so real and his eyes quickly fill up with tears. Now, it is my turn to comfort, hug and come alongside. I’d take him home with me if I could.

In keeping with the last post’s theme of kindness, never underestimate what your smile, greeting or listening ear means to hurting people. Kindness is the balm that heals the broken hearts around us. It doesn’t take much time and it costs us nothing.

I guess that is why this blog exists and this community. While strangers, we share an experience that links us together. Through the words we share, we look each other in the hearts and say, “I know your pain, you’re gonna make it!”

I really try not to ever write a blog post when I’m mad. The end results are never good. So today, even as I am feeling a little hot under the collar, I will try to be objective.

I’m just recovering from an unpleasant phone call with very rude health care worker and I still haven’t got the bad taste out of my mouth. A personal matter, unrelated to my mother or being a caregiver, still it highlights one of the most stressful issues that everyone has to face: rudeness and apathy when being cared for.

You know what I’m talking about:

The answering machine message left by a voice that can only be described as bored, telling you that your mother-in-law’s level of care has moved to palliative.

The (again bored) answering machine message that they have found a cyst in your breast, that your heart beat is irregular or that they’ve found a tumour.

The “How can I help you?” without looking up from their paper in the tone of voice most save for telephone solicitors – that makes it clear they don’t want to help.

You’ve waited for 15 minutes in the wrong waiting room and when your number finally gets called, eyes are rolled and you receive unclear, snappy directions to where you should be – idiot!

Let me stress, I have had the privilege of dealing with some amazing, caring and nurturing people in the health care field. I can’t say enough good things about the staff and doctors at my mother’s nursing home! On a personal level, a few weeks back, I had a little health scare of my own that resulted in a few ultrasounds and a mammogram. (I’m in perfect health!) Everyone from the nurses, the technicians and the administrative clerks was surprisingly empathetic, friendly and helpful. But, WOW, what a difference it makes when they are not.

I don’t think that many people realize that caring for others, how you treat people is almost as important as what you do or know when you treat them. When people, particularly seniors, find themselves in need of health care they are SICK, FRIGHTENED and VULNERABLE. It’s bad enough to be rude and apathetic when you’re someone’s internet provider, but it is almost inexcusable when dealing with the hurting and ill. This is especially true with older people who don’t ask questions and have trouble recalling yourmedical-speak. Just think about the difference a little eye contact, a warm voice and a caring smile make to a person facing cancer, dementia or their own death; Compare that to being in a room full of people who couldn’t give a care that your world is crashing down around your feet. Shame on you patient haters!

I get it to a point, clinics and hospitals are cash strapped and staff short, but being busy and over rushed are not excuses for rudeness and apathy. Look around you, the people making an effort to be nice are just as busy as you are!

Maybe, it starts in the training of staff and their evaluation process. Maybe, if people were held accountable for how they treat people and not just their level of productivity, we’d see more care in health care. Maybe, it is just a matter of everyone trying to be better people. I am not naïve to the fact that there are patients who behave rudely, with a sense of entitlement and impatience. But seriously people: BE NICE!!

When I first heard the Alzheimer Society of Canada was launching a national campaign called “See me, not my disease. Let’s talk about dementia.” I had to smile. “I get that. I totally get it!”

Being able to “see” my Mom beneath the veil of dementia has been a saving grace as I walked alongside her in her dementia. It wasn’t until I really grasped this concept that I was able to maintain a meaningful relationship with my Mom.

Stigma is the root of this year’s theme and for good reason.

According to a recent poll by Alzheimer’s disease International, 40 per cent of people with dementia experienced loss of friendships after being diagnosed. People just don’t know what to do or how to respond to such a bomb shell. Fear, stigma, misinformation all cloud the water and people just drift away, leaving the Alzheimer victim deserted and alone.

Since my mother’s vascular dementia hit us suddenly and by surprise, we didn’t experience the gradual signs of stigma. They hit us as quickly as the disease itself.

The first place we felt the sting of stigma was within the medical community. Doctors at the clinic and hospital level pushed past my mother’s acute care symptoms (delirium, dehydration etc.) and attributed all her behaviours to Alzheimer’s. They stopped looking for solutions because they were not able to SEE my mother, a woman who only weeks early had been paying bills, driving her car and cooking meals. They couldn’t see her at all -only her disease. Once the label had been cast, we lost our voice. In a matter of weeks, to the outside world she transformed into a crazed old woman and I her bothersome caregiver.

But it isn’t just the medical community who has stopped being able to “see” Mom, it has happened in many ways. Friends and family visits drop off. People have said, “I feel like she’s already gone. What’s the point in visiting?” Last summer, I passed a clergyman in the hallway who was visiting another resident at the nursing home. As he passed me, he asked my Mom’s name. I told him her name and room number, thinking he wanted to visit with her, but he responded, “Oh, she wouldn’t even know I was there.”

I was so stunned by his words I couldn’t respond. Firstly, because Mom is still quite capable of enjoying conversation and company, but secondly, how sad to think a minister would forget that a Christian woman could ever be too old (or too far gone) to receive comfort and peace from a word of prayer or by hearing long-loved scriptures.

The diagnosis of Alzheimer’s is a death sentence, yes, but we need to stop burying people before they are gone. Everything changed for me once I realized that although my mother’s memory and personality is slowing eroding away, she is still “in” there – I just have to look harder.

Sad as it is at times, my job is to make connections. Some days we talk, remember, joke and laugh. But other days it is only a held hand and the knowledge that I have left her feeling loved, affirmed and cared for.
May I never lose my ability to look past the paranoid behaviour, the messy way she eats her food, the forgetfulness and sometimes even non-friendly behaviour. May I forever see the woman who brought me into this world and not only her disease.

It is hard to believe two New Year’s Days have past since I began this blog. According to the statistics, this blog had 6,800 views last year. Our readers are from all over the world! Funny how knowing that makes me feel a little less alone in my caregiving journey. Hopefully you feel less alone too.

Last year, the blog post “Caring for Each Other” (written last Spring) was the most viewed post, receiving 130 views. So, I am posting it again. While the dates might not line up, the heart of the message is still the same. We are not alone. Blessings to you in 2013. ~Sharon

Last week I had the privilege of gathering with a group of other caregivers at a Caregiver Support Workshop called “In My Shoes”. It was an amazing event complete with speakers and booths with information and resources.

What struck me the most at the event was a sense of what Anne of Green Gables used to call a “kindred spirit” that existed between the other caregivers and myself. Without even knowing each other, a feeling of intimacy and understanding developed as soon as the words, “My husband has Alzheimer’s” or the exchange of teary glances from two sisters supporting their mother were shared. We really are all in this together.

I’m sure there are people who find it odd that I share so openly private family matters. Most of us were raised not to do so. But, there is great comfort and strength given and received when we share with someone who knows what it feels like to be “in our shoes.”

Let’s be honest, this caregiving gig can be an ugly thing. We see our spouses and parents fade into a shell of what they used to be. Often their behaviours are dangerous, difficult and embarrassing. If you are the lone ranger type, I encourage you to reach out to someone who is walking the same path as you. Find a support group; they are full of people – just like you, whose lives have been derailed by dementia and loss. These people have found resources, ideas and ways to cope a little better and are there to make your load lighter. Contact your local Alzheimer’s Society, your local community care supports and VON for Respite. You’ll be glad you did. You are not alone.

Finally, here is a cute little gift our local Alzheimer’s Society of BHQ gave the workshop participants last week. It is called “The Caregiver’s Tool Kit”. In it is everything you need to be a caregiver and I doubt they’d mind me sharing it:

The Caregiver’s Tool Kit

Cotton Ball: A reminder that no one ever died of dust bunny disease. Quit feeling guilty for what’s left undone.

Safety Pin: To hold yourself together on frazzled days.

Candle: To remind you to let your light shine, but burn it only at one end.

Rubber Band: For life’s boo-boo’s. Mistakes are essential for learning to live to one’s potential but look for the hidden lessons.

Outlet Protectors: Don’t let all your energy drain out when you feel frustrated. Plug the leak with a brief break.

Perspective Adjusters: These look and taste like chocolate kisses, but they are molehills; don’t make them into mountains.

Eraser: For when you want to change your mind. Sometimes second thoughts are second chances.

Paper Clip: Plans that are neither glued nor stapled are easier to re-think. Be willing to change.

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here's an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 6,800 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 11 years to get that many views.

I wasn’t even finished the first chapter before a light bulb had gone off in my brain. The words I was reading were so profound, yet so simple. I wondered how it hadn’t occurred to me before. Suddenly, I found myself talking aboutDaring Greatly, by Brene Brown, in every conversation. I felt like a new apostle who had to share the good news – “We all live in shame, but we don’t have to anymore!” The book changed me.

As I have mentioned many times before, Mom’s dementia and delirium hit our family like a sand storm. We didn’t even see it coming. It also came to head a few days before Christmas. Difficult, heart breaking decisions had to be made. Her safety became paramount and her rights and sometimes dignity came second. It was a horrible few months that still hurt remembering.

There was blame; some from within… and some from without. “How could you? Why did you allow that? What kind of daughter would…?”

By the time her nightmare ended and she’d begun to find peace, I felt like there were a thousand bees buzzing inside me, so I began to write this blog. Even as mom settled into the rhythm of long term care, I wrote about health care hurdles and the gaps in the system. I wrote about loss and love and grief. I felt compelled to share, with everyone and anyone I could, the things I had learned and the emotions that I carried. For surely if I felt this way, others must to.

Soon after I was speaking to every medical community and caregiver group that invited me, trying to make something good come out of something so terrifying – becoming a dementia-care “evangelist”, of sorts.

But it wasn’t until I finished Daring Greatly that I had a name for the gnawing feeling I still carried around – even two years later.

Shame.

As caregivers we all face guilt for not doing enough. But this monster is stronger than guilt. False-guilt fades when faced with the facts, but shame is like arthritis – it aches in your bones every time the weather changes. Every time someone writes me or tells me what a great daughter and advocate I am, I shudder a little. If they only knew… they’d unsubscribe.

And so, it is time.

It is time to face this giant and slay him dead. Maybe you can help me. Maybe I can help you.

And so I declare:

I am a good daughter, not a perfect daughter, but a good one who loves her mother very much and always will.

I will not spend another micro second trying to convince others or justify the actions I took during mom’s darkest days. I did the best I could with the information and resources I had and if no one on earth believed that, it wouldn’t make it any less true.

Other people’s opinions of me, no matter how much I respect them, are not the basis for my self-worth. In layman’s terms: “Who cares what anyone thinks!?”

I will forgive and embrace grace, not just for others but myself. I will not resort to blame and bitterness when I am feeling vulnerable or falsely accused.

I will stop rehearsing past hurts in my mind. It’s time to stop sucking on this bitter candy and spit it out for good.

My writing and speaking will never be a quest for redemption or penance. My motives will be pure: to share information, to help facilitate change, to love and support others emotionally and to be a light in a dark and lonely world.

Walking through the mall always creates a little ache in my heart.
I do not frequent the mall often, so usually it is special occasions that Iâ€™m shopping for â€“ Birthdays, Motherâ€™s Days and of course, Christmas.
Momâ€™s dementia and delirium bloomed for the first time during a Christmas Season. Itâ€™s hard to believe this time two years ago we were planning her living space in the back of my house. We installed a beautiful electric fire place and covered it with greenery. Itâ€™s hard to believe that Christmas our family gathered minus my mother, as she sat (often restrained) in a hospital room.
I feel so thankful that those early days of madness are past, yet still in me there is a longing. It hits me the hardest when I go Christmas shopping. Momâ€™s gifts that sad Christmas went unopened. When I cruise the aisles I canâ€™t help but think, â€śMom, would like that.â€ť But I know there is no room the tiny space where she lives in the nursing home. I know that unlike many people with dementia who love to hoard, my mother is a purger. Knick knacks and even photographs have a good chance of making it to the trash can and technology (even the CD player) stresses her out too much.
I guess the ache is a longing for Christmasâ€™s past; Christmas that included both my parents, my in-laws, grandparents and family members intact, back when I hadnâ€™t grown up enough to know that nothing lasts forever.
And yet, I will again embrace gratitude. I am so thankful for one more Christmas with mom, my family and friends. I will be thankful that I am blessed.
And I instead of knick knacks I will give mom what she needs: my love, my respect, my time, laughter, song and simple celebration.Â

In many ways, this blog and this journey I have been on, since my mom became ill, has been about finding answers. What’s going on with my mother? What are these terms and services I do not understand? What should I do?

But, the longer I am on this road, the more I understand, that my first sentence is becoming true in my life. The more I learn, the less I know.

It wasn’t until a few weeks back, while sharing my mom’s story at theEmerging Priorities in Aging, Providence Care, Research and Innovation Day, that I had this little epiphany.

There I was in the room full of doctors, geriatric nurses, specialists, geriatric psychiatrists, heads of hospitals and nursing homes, surrounded by the people who know “everything”. I finally got up the nerve to ask a question that has been burning within me (without me even knowing it). This is the question that has lived there below the surface, marinating in guilty feelings – “What should I have done differently?”

In this room full of the smartest of the smarts, there was a long silence.

Even as the words came out of my mouth, I realized I haven’t been looking for answers, but one magic answer. What should or could I have done to “fix” my mom. Guess what? There are no easy answers. Elder care and any mental health issue is a complex, multifaceted situation. There are social, spiritual, physical and mental factors all taking place at one time.

SO, why do we rush to these easy answers? Well, that is the second part of my epiphany: Control.

When we feel vulnerable, frightened, out of control, we grapple for simple solutions, to ease our discomfort with the unknown. We want to feel in control again. Beware of making choices while in this state of mind. I can promise you they won’t be wise decisions. To fix these feelings we do many things: we deny, we blame, we over react, under react, make sudden life altering choices and much more.

Yes, sometimes in crisis we have to make decisions quickly, but always examine your motives. Ask, read, consider, and learn as much as you can and go with what you know and let go of the guilt. The longer I write this blog, answer people’s letters and speak to people, the more I find myself saying: “I don’t know.” It isn’t the easy answer, but it is the true one.

Yet, let me walk beside you as we walk this difficult journey together. We’re going to make it.

I’m learning to be grateful. I don’t just mean saying thank-you more or being more polite.

I am learning to embrace gratitude in every single aspect of my life.

It is no surprise, in this hectic, fast paced, technology-laced world; people are seeking lives of grateful simplicity. Blogs, magazines and books are celebrating the notion of living with less and actually “seeing” what and who we have – instead of walking right by. Authors like Ann Voskamp and Brene Brown’s books are making the New York Best Seller’s List.

But the person I am learning the most from is my Mom.

Just last week I watched her dance. As I arrived at the nursing home, Mom was a few feet ahead of me strolling down the hall behind her walker. She’d stop and shake her leg, take a step, stop and shake the other one. Not sure what was happening I picked up my step. Perhaps her pant legs were dragging on the floor I thought, anticipating that she might take a tumble. But when I got up to her side, I realize she was still humming, dancing and enjoying the line dancing event that had just wrapped up. Right there in the hallway she showed me her best moves.

I am not trying to suggest someone losing their mind, their personality and their memories to dementia is something to wish for, but at the same time watching Mom live with it has taught me about a lot about living.

At the beginning of her disease, Mom fought hard for control of her mind and her memories – a battle she could not win. But once she surrendered to her new normal, she began to practice something that has really left me shaking my head – daily gratitude.

Mom no longer worries about her car, her furnace or what people think. She doesn’t stress for an afternoon over whether or not she should apologize for being misinterpreted. She no longer frets about money, her children’s health or wellbeing, her own health or the condition of her soul. She just lives every day in a state of simple gratitude.

She is thankful for the person who serves her lunch. She is thankful for my modest visits. She laughs at the most basic jokes and she smiles back at the faces smiling at her. She hugs and says, “I love you,” without any thought of social graces or people’s perceptions. She gets more joy out of a bowl of ice cream than most people get at an entire amusement park. When she steps outside she sees God in the large trees, the flowers and the squirrels and offers Him thanks and praise with simple child-like prayers.

Perhaps, there is something to this scaled-back basic way of life. I want to be more grateful for things as basic as a warm cup of tea, my son’s laugh, a warm sweater on a cold day, a friend’s phone call, my husband’s embrace, the vibrant colours of the changing leaves and the very breath I breathe. If I could only clear my mind enough to daily notice and appreciate all the little things I miss each day, my life would be lighter, fuller and happier.

A little more than a year has passed since I began this blog. In many ways it has been an unpacking of my own tangled thoughts and emotions – a way to pour out all the worry, pain and disappointment, sort it out in my mind and heal. Recently, I read through the things I’ve written this last year and I discovered a common thread.

I have written a lot of what some might call optimistic or even romantic notions about caregiving. I’ve talked about how each visit I try to “find” my mother. I’ve described the joys and blessings of being able to return the love and care that my mother once gave me. I’ve talked about forgiving myself, putting down the guilt and living in the moment. As I read over my posts, I couldn’t help but think that while I still believe all those things – I don’t always feel them.

After all, let’s be honest – it is still hard!

As you know, loving and caring for a parent, a sister, a spouse, a friend who is slowly dissolving in dementia or illness is a long, lonely, guilt wracked, worry-filled and heart breaking road.

Even though things have settled some from our early nightmare days of delirium and paranoia, some days are still tough. Just when I think I have my emotions under wrap, that I’ve got “used to” it all, grief will side swipe me from the middle of nowhere. Some days, I’ve stayed home because I just didn’t have the heart to see Mom walk me to the door and ask if she can come too. Some days it is just too hard.

Even though I’ve learned the importance of forgiving myself and letting go of guilt, lately guilt seems to be licking at my heels. Now that I am working again I have less time and less energy to visit Mom. She is less in my thoughts, I am less available and I feel guilty for leaving her. (Oh, I know in my head what the truth is, but the heart is harder to tame some days.)

Even though she is teaching me to embrace each moment – I still mourn the Mom that used to be and at the same time worry that I’ll soon lose her all together.

You know what I’m talking about – you’ve been there too.

So, why do I write about the “happy” side of caregiving so much? Am I being dishonest? Is it wishful thinking?

I don’t think so.

In all honesty, day to day caregiving is everything I’ve mentioned above. It is tired, sad, lonely, and hopeless and guilt wracked.

But, that is just the small picture.

When we take a step back and go up on the “balcony of the situation”- there we see the big picture.

Then we see that caregiving really IS a privilege. We see that for a short time (although it doesn’t seem short while we’re in it) our loved ones remain with us and while difficult sometimes – this is a gift.

We are answering a great calling to love and keep someone we love’s dignity and honour intact. By remembering who they once were and yet loving who they have become – somehow we keep them real and unforgotten. That is important.

Remembering the big picture helps us to hold on and inspires us to get up and go again.

Eating a well-balanced diet in your senior years is crucial to promoting good health. Foods rich in essential vitamins and minerals can help reduce the risk of heart disease, stroke, osteoporosis, type 2 diabetes, anemia, obesity, and other conditions. A balanced diet also gives you the energy needed to make it through the day.

One of the best ways to maintain a healthy weight and ward off heart disease, diabetes, stroke, high blood pressure, and health complications is to exercise and stay active. It’s important for seniors to find an exercise activity that they enjoy and can perform safely. In addition to aerobic exercise, seniors should also incorporate strength training, balance, and flexibility into their workouts.

Seniors need to exercise their brains just as much as their bodies. Older adults can improve their brain function by reading and playing mind games, such as crossword puzzles and Sudoku. Another way to exercise and challenge the brain is to learn a new skill like painting or playing the piano.

A big part of staying healthy as a senior is keeping up with your regular medical check-ups. From annual immunizations and preventative screenings to regular teeth cleanings and eye exams, it’s crucial that seniors make their doctor’s visits and use this time to ask questions. Seniors may want to bring a trusted friend or family member along to have a second set of ears.

Studies show that socializing, especially in the senior years, can help delay memory loss and preserve brain health. Keeping an active social life is critical to one’s well-being and happiness. Communication and social interaction may also prevent depression and reduce stress and loneliness. They can join a seniors group, volunteer, or simply stay in touch with friends and family.

Seniors need about seven to nine hours of sleep per night, but most aren’t meeting that recommendation. Many seniors have trouble falling and staying asleep and they tend to sleep less deeply than younger adults. Even though seniors tend to get sleepier earlier at night and awaken earlier in the morning, it is still crucial that older adults get enough sleep at night to keep them active, alert, and healthy.

It’s estimated that one in three seniors suffers a fall ever year, many of which are caused by hazards around the home. Although most household accidents are preventable, seniors still need to take extra precautions to stay safe within their home and out in public. Depending on their ailments or needs, some seniors may want to invest in safety equipment and make minor home modifications, such as handrails and a handheld shower head.

In keeping with last week’s blog post about Enjoying the Moments, here is a submission from some of my favourite retirees Alec and Margaret McVean, reminding us that every moment is a gift.

Enjoy!

You know. . . Time has a way of moving quickly
And catching you unaware of the passing years.

It seems just yesterday that I was young,
Just married and embarking on my new life with my mate.
And yet in a way, it seems like eons ago,
And I wonder where all the years went.
I know that I lived them all…

And I have glimpses of how it was back then and of all my hopes and dreams…
But, here it is… The winter of my life and it catches me by surprise…

I remember well…
Seeing older people through the years and thinking that those
Older people were years away from me and that winter was so far off
That I could not fathom it or imagine fully what it would be like…

But, here it is…
My friends are retired and getting grey…
They move slower and I see an older person now.
Some are in better and some worse shape than me…
But, I see the great change…

Not like the ones that I remember who were young and vibrant…
But, like me, their age is beginning to show and we are now those
Older folks that we used to see and never thought we’d be.

Each day now, I find that just getting a shower is a real target for the day!
And taking a nap is not a treat anymore… it’s mandatory!
‘Cause if I don’t on my own free will.. I just fall asleep where I sit!

And so, now I enter into this new season of my life unprepared
For all the aches and pains and the loss of strength and ability
To go and do things that I wish I had done but never did!!

But, at least I know, that though the winter has come,

And I’m not sure how long it will last…
This I know, that when it’s over… Its over…

Yes, I have regrets.

There are things I wish I hadn’t done…
Things I should have done, but indeed,

There are many things I’m happy to have done.
It’s all in a lifetime…

So, if you’re not in your winter yet…
Let me remind you, that it will be here faster than you think.
Whatever you would like to accomplish in your life, please do it quickly!
Don’t put things off too long!!

Life goes by quickly. So, do what you can today,
As you can never be sure whether this is your winter or not!

You have no promise that you will see all the seasons of your life…

So, live for today and say all the things you want your loved ones to remember…
And hope they appreciate and love you for all the things
You have done for them in all the years past!!

It has been awhile since I’ve posted, partly because of commitments I have to family during the summer, but also because things have been pretty good for my Mom. There just hasn’t been much to share.

In some ways Mom is slipping. She has had some minor falls and has a hard time pulling up any memories, including her long term memory, which up until now was fairly intact. But, she has been happy and funny. Even though she can’t carry on a true conversation, she can still surprise you with witty one-liners that cause you to bust a gut with laughter. Her whole face lights up when I walk in the door and while she doesn’t make much sense, the connection is undeniable. I’ve been able find peace in that. So much so, that I sometimes almost forget. I almost forget that my mother is slowly dissolving before me.

Then, something happens where I have to realign this new mother I’ve grown to know and love, with the mother she used to be…and I remember how much I have lost. In two weeks my daughter will get married. Thankfully, Mom is going to be able to attend the ceremony with some assistance. Although, I am happy she will be able to be there, the truth is Mom won’t really be able to grasp the joy of what is happening. To her the church will be a sea of strangers mixed together with some familiar faces. By the time she wakes up the next morning, the memory will be gone.

It is here my two realities collide –loving the woman I know and missing the woman I’ve known. I always recognize this is happening when the tears begin to live just below the surface. It is in these moments that I remember I am partly orphaned. When I want more than anything to curl up beside her on the couch and listen to her stories, but the stories are gone. I want to ask, “What was I like as a young bride?” but I know that Mom has already passed on, leaving behind this partial Mom-child.

I wish I could tell her, “I miss you, Mom, (even though you are still here).

I miss your wisdom, your stories and your comfort. I miss the way you worried about me and prayed for all your children and grandchildren by name. I miss seeing you scurry about the house Dad built and swinging with you on the front porch. I miss being the child instead of the mother. I miss YOU!”

Dementia is a terrible thing!

BUT, tomorrow is another day. Life goes on and just like other caregivers do, I will get up and try to find the joy hiding in all the sorrow. Tomorrow, I will go and see the mother that is still present in this life and be thankful for the connection that remains.

Well, summer is wrapping up and I can hear the call of September in the back of my mind; calling me back to schedule, productivity and more of a routine. Although, I hate to say good bye to sunny afternoons spent by the pool, another part of me looks forward to moving into another season of life. I feel an optimism bubbling up as I begin to hope for new experiences and opportunities.

But, one of the difficulties of caring for an aging parent or spouse is that it is difficult to find that hope. When we look ahead to this season of their life, there is no spring, summer or fall left – only the cold realities of winter. How can I look forward to this season of caregiving when all I predict is the inevitable losses that will occur? My mother will lose more of her memory, physical abilities and personality. This year I witnessed many caregivers at my mother’s nursing home say goodbye to their spouses and parents. Reality tells me it is only a matter of time.

Yet, I am learning things from my mother. I may look ahead to the future, but the truth is:all we really know and have is the moment we are in right now. None of us know what tomorrow will bring. If we could somehow let go of those future moments we hold on to, try to control, manipulate and worry about, imagine how peaceful and productive our lives would be.

The summer was a fairly uneventful one for my Mom. The most exciting thing was she was well enough to come to my daughter’s wedding ceremony. She not only saw her sisters, all her children and most of her grandchildren, but she was able to remember (at least in part) being there.

While I may not see much to be hopeful about in her future, I am committed to enjoy the moments we are given. I am committed to “finding her” and making that connection that only she and I can make as often as possible.

Someday those moments, those memories will be cherished gifts.

P.S. Speaking of memories, it has been one year since I began this web blog. When I think about how much I have experienced because of it, the people I have met (in person and online), the opportunities I have to had speak because of it and the healing I have experienced through it – I am truly grateful! Thanks for sharing in my caregiving journey.

Not only because My Mother’s Caregiver is operating on summer hours, (late at night or rare moments when beloved family is not present), but also, because people need to know that I did in fact receive a welcomed response from my letter to Quinte Health Care Hospitals.

If you recall my last post, it was a letter to the President and Chief Executive of Quinte Health Care, Mary Clare Egberts.

To be honest, I did not expect a real response…maybe a form letter thanking me for writing or a note from a public relations worker. However, happily, I was wrong. Mary Clare Egberts phoned me at home. Not only did she phone me, she phoned me again until she got me at home. Our conversation was at least a half an hour long. I felt heard, affirmed and encouraged to share my observations. I know I am an optimist, but it felt to me like I was speaking to someone grappling with difficult issues, doing her best within an imperfect system and most of all someone who cared.

And isn’t that the real issue?

Maybe this blog won’t change any government policies. Perhaps it won’t make a tangible impact on any medical or social decisions, BUT if can make people stop and care, then it has done something.

If it encourages health care providers and MPP’s to get a little emotional about the plight of families and elders in crisis, if it makes us pause before we see someone as “a crazy old person” or make us hesitate before we get impatient with a struggling senior, if we can be reminded that THESE ARE PEOPLE – someone’s mother, father, sibling, friend…

I am sorry to have neglected you in weeks past. I really am still committed to you. I think about things I want to say to you almost every day.I pass the computer late at night and pause, missing you but alas I have had to walk on by.

You see I started a new part time job and my time has been cut in half. The weather got nice and gardens needed to be planted, grass needed to be cut and the pool needed my attention too. My daughter’s upcoming wedding and departure from the household has occupied my mind and time and of COURSE I still am caring for my mother – not just writing about her. :)

But don’t worry, dear blog, I have not forsaken you. I am all fired up about the shortage of ALC beds and have heart melting stories of seniors and their spouses I have met at the nursing home I am dying to tell you. I am meeting new people with new resources I will be sharing. Mom has been doing fine – no emergencies- just so you know. So, hopefully we’ll meet next week. Until then, keep sharing the info and stories that are already here with the rest of the world. Us caregivers really need each other.

Telling my mother’s story has taken me places I didn’t expect to go. Last Thursday, I travelled by train with two executive directors of local Alzheimer Society chapters to Queen’s Park where we joined other Alzheimer advocates from across Ontario.

I was fortunate enough to find myself face to face for thirty minutes with my M.P.P. Rob Milligan, talking about my mother and our dementia-journey.

The Alzheimer Society of Ontario unveiled a five-point plan called FocusON dementia that would improve the quality of care for Canadians with dementia while staying within the government’s budget guidelines.

In the past few months I have been invited to be part of several initiatives where I was given the opportunity to tell our story. This always leaves me shaking my head in wonder since for so many months I was ignored, pushed aside and forgotten.

Suddenly, I am finding people really do care.

This fall I began serving on the Behavioural Support Ontario guiding coalition as a “consumer” invited to share my observations and life experience. Since then, I have been invited to share specifics of our story – the good the bad and the ugly – to healthcare professionals, geriatric psychiatrists (including the team that served my mother), fellow caregivers and now my Member of Parliament. My mother would be proud if she didn’t have dementia.

Mom was a gifted public speaker and story teller. I think if she were in my shoes she’d be doing exactly the same thing I am. My father was a lay-pastor of a small-town southwestern Ontario church, but Mom could hold her own behind the pulpit. It is one of the reasons it makes me so sad to see her lose her ability to converse clearly.

But, another thing happens at these events that lift my spirits is meeting other caregivers. A beautiful woman from Toronto named Judy Southon (look for her dementia-focused Facebook page) got up to share her story. Her husband, Vic, recently passed away after suffering the effects of dementia. By the time she had spoken her first sentence, I was wiping tears from my eyes. When other caregivers share their story, something special happens. It is as if someone is telling your story – just changing the names and dates. After Judy’s talk, we embraced and swapped stories. I left with the feeling I had known her for years.

Some people wonder why I write My Mother’s Caregiver, hanging our private laundry out for the world to see. It is because of people like Judy. Dementia is such a sinister opponent. It hits people from every class, religion, gender and financial status. It sucks the life, dignity and vitality out of people and cuts deep into the hearts of everyone who loves them. This doesn’t just happen once either – it happens over a long period of time. A little bit of dying happens daily.

Caregivers need each other! Coming together makes us stronger. Coming together makes us feel heard and known. We are not alone. YOU are not alone.

It is the look I see every time we’re around their grandmother. It isn’t exactly fear, but it is close. Despite their obvious attempts to be brave and friendly, they look more like they’re talking to a stranger than to the woman who rocked them to sleep when they were only babes.

I understand it. They aren’t the only ones who make that face. I see it in many people who knew and loved the pre-dementia version of my mother. Today they don’t know what to say or where to look. An uncomfortable silence hangs over the room and the visits get less and less frequent.

In the beginning, it used to make me angry. People stopped asking how Mom was and she seemed so forgotten. I felt like they’d abandoned Mom…and abandoned me. After a while it just made me sad. Couldn’t they see what I see? Couldn’t they see that she was still in there?

But I’m learning it is very wrong for to judge them. After all, I’ve been visiting my mother three times a week for over a year. I have gotten used to the way she spills her food when she eats, the losses to her memory, reasoning and conversation- but I didn’t always feel this way. Initially, these changes rocked my very world. I have had more time to process and accept her shocking physical and mental changes. But for others the loss is genuine; in reality for them the woman they knew and loved is gone.

When Mom first began showing signs of Dementia, her good friend Betty phoned me. Betty’s mother had recently passed away after battling Alzheimer’s. She laid out the naked truth before me and warned me of the ugliness that was coming our way. She didn’t try and sugar coat it. Yet still, she talked with such fondness about the wonderful privilege and blessing she’d had being able to care for her mother. I will never forget the way she talked. I left the phone call feeling encouraged and honoured. Most days I still feel that way.

I’ve been able to experience an intimacy in being my mother’s caregiver that has kept me from losing all of her – the way others have. Today was one of those days. While visiting, Mom and I began acting silly and I crawled up into the bed with her like old times. Lying there cuddling and laughing, I was able to enjoy that sacred moment and cherish it without wishing for the moments when her mind was whole and her body was strong.

I remembered that even bitter sweet moments are still sweet. I told Mom I loved her and she responded as only she could, “We still have each other and that’s enough for now.”

P.S. I just wanted to thank you, the readers, for spreading the word about My Mother’s Caregiver and to extend a welcome the new members of this community. Today alone there were an amazing 130 page views, as well as several likes and comments. How exciting!

Last week I had the privilege of gathering with a group of other caregivers at a Caregiver Support Workshop called “In My Shoes”. It was an amazing event complete with speakers and booths with information and resources.

What struck me the most at the event was a sense of what Anne of Green Gables used to call a “kindred spirit” that existed between the other caregivers and myself. Without even knowing each other, a feeling of intimacy and understanding developed as soon as the words, “My husband has Alzheimer’s” or the exchange of teary glances from two sisters supporting their mother were shared. We really are all in this together.

I’m sure there are people who find it odd that I share so openly private family matters. Most of us were raised not to do so. But, there is great comfort and strength given and received when we share with someone who knows what it feels like to be “in our shoes.”

Let’s be honest, this caregiving gig can be an ugly thing. We see our spouses and parents fade into a shell of what they used to be. Often their behaviours are dangerous, difficult and embarrassing. If you are the lone ranger type, I encourage you to reach out to someone who is walking the same path as you. Find a support group; they are full of people – just like you, whose lives have been derailed by dementia and loss. These people have found resources, ideas and ways to cope a little better and are there to make your load lighter. Contact your local Alzheimer’s Society, your local community care supports and VON for Respite. You’ll be glad you did. You are not alone.

Finally, here is a cute little gift our local Alzheimer’s Society of BHQ gave the workshop participants last week. It is called “The Caregiver’s Tool Kit”. In it is everything you need to be a caregiver and I doubt they’d mind me sharing it:

The Caregiver’s Tool Kit

Cotton Ball: A reminder that no one ever died of dust bunny disease. Quit feeling guilty for what’s left undone.

Safety Pin: To hold yourself together on frazzled days.

Candle: To remind you to let your light shine, but burn it only at one end.

Rubber Band: For life’s boo-boo’s. Mistakes are essential for learning to live to one’s potential but look for the hidden lessons.

Outlet Protectors: Don’t let all your energy drain out when you feel frustrated. Plug the leak with a brief break.

Perspective Adjusters: These look and taste like chocolate kisses, but they are molehills; don’t make them into mountains.

Eraser: For when you want to change your mind. Sometimes second thoughts are second chances.

Paper Clip: Plans that are neither glued nor stapled are easier to re-think. Be willing to change.

My Mother’s Caregiver made SHORTLIST OF FINALISTS THE WORD GUILD, 2012 CANADIAN CHRISTIAN WRITING AWARDS in the Article Blog Series Category for the Posts: “The Reluctant Visitor” and “Pushing Past the Guilt and Worry”:http://www.thewordguild.com/

Last week was a bit of an anniversary, although not one we really celebrated, one year has passed since my mother moved into her nursing home.

Looking back over this last year and the chaotic months before it, there are so many things I know now that I did not know then.

Delirium? Alzheimer’s I’d heard of, I had a vague understanding of dementia, but what the heck was delirium? Today I know that a senior’s mental health is a fragile thing that can be affected by vitamin deficiencies, dehydration, illness or the most surprising but nasty mind-benders, a urinary tract infection. Even very bizarre and frightening behaviours in the elderly can have temporary physiological reasons not related to Alzheimer’s.

Hospitals are not senior-friendly. Even the most caring and capable hospital is not designed to care for seniors exhibiting “behaviours” related to delirium, dementia or Alzheimer’s. Rushing off to hospital hoping for tender loving care is going to leave caregivers cold.

Caregivers need to act as advocates for their loved ones. For a caregiver like me who is passive by nature and non-confrontational, it was difficult to challenge doctors, nurses, hospital discharge planners and CCAC staff when I questioned if their actions were the best thing for my mother. However, if you are a take-charge, get- your- way person, then being an advocate might be equally difficult because sometimes gentleness, waiting and negotiating is required to be a good advocate.

There is life after Alzheimer’s. When Mom got sick a year and a half ago, I felt as though my mother had died. I have learned as difficult as it is to see your loved one slip away, there is still life, love, intimacy and affection to be given and received. As I’ve written before I discovered, Mom is still “in there”- I just have to look harder. Changing my mindset has allowed me to enjoy my mother again – even as she fades away. Every good day is a gift to be cherished.

I know now that sharing my experiences (the good the bad and the ugly) and carrying the pain of others, has done as much for me as anyone. Writing this blog, articles and speaking to groups about my experiences has helped me process my feelings, understand and verbalize my grief and experience healing. Feel free to leave your story here on our “Our Story” page or on My Mother’s Caregiver’s Facebook page.

I am still mulling over a conversation I had with a frightened woman this morning. She is at the beginning of this ugly journey – looking for answers and support. My heart aches for her.

One of the most difficult things about beginning this caregiving journey is knowing where to find help. If you are from the Greater Toronto Ontario area, here is something that might help:

Insights Into Aging 101

Interested in learning about age-related health topics? Insights into Aging 101 is an interactive, educational series to help you become a more informed healthcare consumer and make you feel empowered when managing your own health needs or that of aging loved ones.

The curriculum is packaged into concise teaching modules for the public, and our experts in aging will cover two topics per session.

Once you have completed the series, you will have a good understanding of the resources available to you within the community and be skilled at critically appraising the barrage of health and science news headlines you see every day. Participants also receive a certificate for attending the entire series.

Class begins on Tuesday, May 1 – 29 and will be held on five consecutive Tuesday evenings from 7 to 9 p.m. in Lofts Hall (main floor, Apotex) at Baycrest, 3560 Bathurst Street, Toronto, M6A 2E1.

If you are from the Quinte, Hastings, Northumberland or Prince Edward Counties – be sure to check the pages of My Mother’s Caregiver for more local supports. See the Alzheimer Society of BHQ for two upcoming Workshops for Dementia Caregivers- A Changing Melody on April 21rst and In My Shoes: April 26th. (I will be speaking at this last one- hint hint)

How do you plan a birthday celebration worthy of 83 years, for a woman with dementia?

The answer is you don’t.

Last year at this time my mother was still in the hospital fighting delirium and paranoia. Determined not to let a little thing like dementia and psychosis ruin her birthday (can you say denial?) I planned a big family celebration. All available family members gathered in the meeting room down the hall from Mom’s room, complete with cake and decorations. The only thing we didn’t have was Mom. In her fragile state, the whole thing left her overwhelmed. She wouldn’t open her eyes, talk to anyone or get out of bed.

Not one of my best parties.

So, this year family members wisely decided to visit Mom in waves throughout the week offering their own congratulations. Still, I wrestled with the urge to make it special – to make it the same as it was before Mom had dementia.

Walking through the department store searching for a gift for her I pondered this very thing. What do I buy for this new version of my mother?

Should I buy her a picture for her room? – No, changing her room disorients and confuses her.

Family photos? – No, the family photos she has are stashed away in her cabinet. She can’t remember who all the grandchildren are (since they keep changing) and looking at them frustrates her.

Special mementos? – No, they would be stolen.

Technology? – No, it will start a fire if it is plugged to the electrical socket.

I could take her out? – No, She’s using a walker now and out-trips take more out of her than they used to. Several weeks after I take her out, she puts her coat on each time I visit, thinking we are going out.

And I realize I am trying to celebrate a personality that no longer exists. This is birthday – dementia style.

So, we begin again. We simplify, we downsize and we stop trying to make it something it is not. We replace the big family dinner -complete with the roast and gifts – with a small cake, a big musical card and a beautiful bouquet at nursing home table.

April 1rst is the anniversary of my fatherâ€™s passing. Not a very good April foolâ€™s joke.
I still remember the phone call in the early hours of the morning, four years ago. A veryÂ shakyÂ voiced Mom called to tell me that Dad, whoâ€™d been fighting a very nasty stomach flu for several days, had woke her in the night. She thought he was in need of more assistance from his sickness, only to find him having a stroke. By the time she got back with the phone and 9-1-1 operator in hand, he was no longer breathing. He was 83 years old.
Heâ€™d had a tough winter, but in retrospect it was a rich one. Surviving a heart attack in November, the family rallied. When he returned home, we all sensed this might be one of his last Christmases. My sister, her daughter and another niece flew home from B.C. â€“ a rare treat. We gathered and took lots of family photos. The day felt like a gift we should cherish. Hugs were given, love was spoken. Then we were blessed again, Easter fell in March that year. Most of my siblings, their grown kids and young children landed back at the homestead, something that rarely happened. The weather was unseasonably pleasant and we played football in the back yard. Again lots of fun and photos- another gift â€“ and then he was gone.
Oddly enough, although I miss my father, I felt peaceful about his passing. He had lived a good, long life. His body was just beginning to fail him and heâ€™d developed Parkinsonâ€™s. In some ways it felt like a blessing heâ€™d been spared a long and drawn out parting. I carried no regrets relationally and although my mother would never fully recover from his death, she was a strong, social and spiritual woman with great supports and connections. Â Sometimes, I feel guilty that I donâ€™t think of him more or feel sadder than I do. We loved each other, but he was a quiet man who lived more in the background of our lives. So, I guess he left less obvious gaping holes in the events of my everyday life than my mother has.
But, when I do miss him â€“ like right now â€“ it washes over me like an icy cold wave.
Anticipating the April 1 anniversary was part of it, but something else triggered it too. Tonight we watched a newscast of a woman who'd performed CPR on her husband while the 9-1-1 operator walked her through the process, saving his life. It reminded me the same thing happened to my mother four long years ago. My poor mother must have been struck with absolute terror as she leaned over Dad following the instructions of the dispatcher. Just hearing the play back of the 9-1-1 call on the news brought it back to me with full force.
Grief is a funny thing. You go along feeling fine. You think youâ€™ve dealt with your pain. It is processed in its proper place. Then one little trigger has you crying uncontrollably- shocking you and the people around you. I never expected grief to feel so much like fear, knocking me over from out of the blue. I felt a similar grief last week preparing my talk for the â€śBehaviour Support Ontarioâ€ť meeting. Going back into the deep dark corners of the memories I had buried, only to discover I had buried them alive.
But I am learning to let myself be sad, to cry, to grieve and to experience loss, rather than shove and shame away my feelings as inappropriate. I am learning that feelings don't have to be rational to be real but most of all, that the pangs of grief are side effects of loving deeply and being loved in return.
Dedicated to my father: Kenneth John Rennick Born: June 16, 1924, Died: April 1, 2008 ~ I love you Dad!

Do you ever go through something really difficult – I mean “life-altering- wouldn’t- wish- this- on- anyone” –difficult only to turn around and find a way to turn this experience into something good?

That just happened to me last week.

I was invited to come and share my mother’s story to a group of 60+ elder health care professionals who provide assistance and care to seniors exhibiting behaviours related to delirium, dementia and Alzheimer’s. These professionals were brainstorming how we can do things better and fill the gaps in our elder health care system.

While I shared in detail the events of my mother’s journey, these professionals examined where the system succeeded and failed my mother. They discussed how we can make things better in the future for seniors and caregivers.

What a wonderful and emotional privilege. Two days later I tear up just thinking about it. Not only because for so long my mother was ignored while we waited for the right health care doors to open for her, but more than just that. I’m still choking up on the thought that sharing my mother’s difficult journey from hospital to long term care could actually affect policies and practices for future families – maybe it is overly optimistic – but I don’t think so. After all, my mother spent her whole life trying to change the world – why stop now?

After what I saw at this event, I believe that people do care. I believe that while change takes time, that there are intelligent and empathetic people leading health care in Ontario, who are working hard to make things better. I believe that even with less money, there can be more care.

The event also forced me to face the grief and guilt I still carry for the way my mother’s care was mishandled in her hospital days. I was reminded of the complexity of the situation and that I needed to forgive myself and let some stuff go. (Some stuff I didn’t even know that I was still holding onto). I have to say to myself- “You didn’t fail your mother,” and mean it – no matter what anyone may think.

To the professionals who work in the mired and imperfect system on behalf of all caregivers (Ok so I am taking liberties) I say: Don’t be discouraged. Do not give up – We need you and We Thank-You!!

Thank you to all of you who work in psycho-geriatric psychiatry. You really do bring people back to life. Never forget the impact your knowledge has on those in your care and their families.

Thank you to the RN’s, RPN’s and PSW’s for the care you give our parents and spouses. The work you do is vital. You keep our loved ones alive in more ways than one. You are the ones who look past the Alzheimer’s, the loss of bodily functions and connect with people’s hearts. You make someone feel safe, fed, warmed and cared for every single day!

Thank you to all the organizations that support caregivers and families, especially allowing them to keep their loved ones home – even for just a little longer. You help carry such a heavy burden.

I hope that sharing what I have learned from my mother’s journey – the good, the bad and the ugly, just might make another mother’s journey a little better.

“My mom just doesn’t seem herself. I have the sense something is off – the same way you know you are getting a cold before it actually hits. I’m filled with dread that any day I will wake up and bam it will hit us. I just can’t shake it.”

This week we welcome guest blogger, Mark Hall, a writer for the Mesothelioma Center. Whether caring for a parent with Alzheimer’s or caring for a loved one with cancer – the issues, burdens and emotions are the same.

Here are some tips to help you (the caregiver) take care of you:

Caring for an ill or disabled family member can be a daunting task. It can take a physical and emotional toll on the caregiver.

Fatigue, guilt and anxiety are common feelings that a primary caregiver may experience. Understanding what causes these feelings, in addition to learning ways to prevent, can improve the quality of life for a caregiver.

Beyond learning about the causes and ways to prevent fatigue and related symptoms, it is important to understand that resources exist to help caregivers throughout this process. Acknowledging the need for help is part of identifying that you may be going through caregiver burnout.

What Is Caregiver Burnout?

According to experts, caregiver burnout is classified as the condition of mental, physical or emotional fatigue that often results from caring for a sick or disabled loved one. This exhaustion happens when caregivers don’t receive the care that they need themselves.

Symptoms of caregiver burnout include:

Loss of interest in normal activities

Irritability

Changes in eating habits and weight

Less interaction with family and friends

Unusual sleeping patterns

Getting ill more frequently

Wanting to harm yourself or the patient

Overall unhappiness

Feelings of anger and guilt may also stem from the caregiver feeling bad about wanting to spend time on themselves instead of their ill family member. This is common and rational. There are various ways to prevent these feelings and all the symptoms associated with caregiver burnout.

How to Prevent Caregiver Burnout

Despite the normalcy associated with caregiver fatigue and guilt, it can be prevented. If you are the primary caregiver, the most important and general action you can take is to take care of yourself. You will not be an effective caregiver if you don’t feel good.

At the beginning of your caregiving responsibilities – or, ideally before you begin providing care – research and educate yourself on the disease or condition of the person you are caring for. Understand what they are going through, what side effects are common and what you should expect of that type of patient. For more information please visitwww.asbestos.com

You need to take occasional breaks to give yourself time to relax and recharge. Don’t overwork yourself because then you will become ineffective. Delegating responsibilities to other family members and friends can also help relieve some stress. Allow them to take a role in the caregiving process as well.

Joining a Support Group

As a caregiver, you can benefit tremendously from available resources like support groups. Connecting with individuals who are going through the same difficulties as you will prove to be inspiring, encouraging and relieving.

To find a support group, get a recommendation from a local doctor or specialist or utilize informational tools like the internet. This can be one of the best decisions a caregiver can make for themselves and for the people they are caring for.

Bio: Mark Hall is a writer for the Mesothelioma Center. Between his interests in environmental health and his writing experiences, Mark has committed to communicating relevant news and information regarding the dangers of asbestos exposure and breakthroughs in mesothelioma treatments.

Ok, so usually this is called My Mother’s Caregiver’s Top Weekend Reading Picks – but this week is the March Break for our family, so this post is going to have to hold you over for a whole week. Enjoy these articles and information.

When the time comes for your parents to move, it is a very big deal; there is much to consider. This week’s guest blog by author and realtor, Julie Wilson is designed to help you through this process:

When the time comes to help your parents with the process of downsizing and moving, is important that all adult children are given the opportunity to be involved. When possible have a meeting to determine what the first steps should be. It is equally important to meet with your parent(s) to understand their feelings about moving. It’s hard for us to walk in our parent’s shoes and just as difficult for them to understand our emotions. We may be trying to do the right thing, but don’t truly know what is right for our parent. In the end, love will be the source of strength and courage.

Once the process is started, the mantra should be “one day at a time”. One step at a time, with proper planning, can be our gift to our parents. It will be gratifying as well as the right thing to do! Many parents have raised their family, enjoying many years in their homes, but now must leave to find housing that meets their current needs and situation. Children want the best for their parents, but don’t know how to begin the process. Here are some tips:

Communication is critical when faced with the daunting situation of finding the proper fit of housing, as well as downsizing years of accumulation.

There are financial concerns and medical issues as well. In many cases parent(s) may have some medical challenges and cannot contribute to the move as they would like. I suggest talking to a qualified financial advisor. These professionals examine the entire financial situation and the needs of the senior. Issues such as Medicare and Medicaid must be addressed, along with assets and liabilities. It is critical to know the amount available for the coming move and finding proper housing. The funds that will be available after the sale of the home–combined with other assets, pensions and income – must last for a lifetime. Therefore, the first step is to assess the complete financial story of the parent(s) before they move.

The next step is to call a Real Estate Sales Representative that has the knowledge and experience to assist seniors, to fully examine the home for its current value, and recommend preparations needed to properly market the home. This Realtor will determine which inspectors are needed to address any structural issues. Now, the net asset (after all selling expenses) will be known, so that you can report back to the financial advisor. The picture is becoming clearer!

Now it is time to look for housing. Visit different types of senior housing with your parent(s) and determine which best match their physical and mental needs. There are senior housing placement services that can assess needs and offer suggestions of suitable housing, saving much time and travel. (Visit Eldercare 101 on this blog for housing links).

Gathering information and consulting professionals is the key to reducing stress and fear for you and for your parent. Wishing you all the best!

“Today I was at the nursing home, “fussing” over my mom. She had two falls, two ambulance rides and two hip/pelvis x-rays in less than a week. I’ll admit I’m worried. Today I put my anxiety into action, speaking to her staff about some safety nets we could put into place to reduce the risk of her falling again…I am concerned, but not consumed.”

To be fair I haven’t read the book yet, but the quotes used to promote the book have already made me mad.

The book, written by Dr. Stephen L. Goldstein called When My Mother No Longer Knew My Name, sounds like it offers some great tips for helping caregiver cope. However, it seems to me to be peppered with something family members and caregivers don’t need – a whole lot of shaming.

Goldstein states, “It’s a national disgrace that so many families dump their elderly parents in nursing homes and assisted living facilities. We need to become a nation of family caregivers. Sons and daughters should invite their aging and aged mothers and dads to live with them.” The quote media uses to promote the book says, “Stop Dumping Parents In Nursing Homes!” While I believe his intentions are honourable, encouraging caregivers they do have the skills to care for their parents, these comments are completely and totally unfair. “I would never let my mother live in a nursing home,” is something he says adamantly.

I take exception to his statements for several reasons. One is I used to feel the same way. When my mom decided to sell her house, we happily welcomed her into our home. We planned ahead for the day, bought a larger place and cleared out a large section so she’d have her own dedicated space with its own bathroom, entrance and exit to the backyard. Four days later, we admitted a delirium-driven, psychotic, frightened and demented woman to the hospital and she never moved back. I was heartbroken, guilt ridden, I believed I had broken my promise to care for my mother and committed the ultimate sin – placing her in a nursing home.

The fact is we were NOT equipped to meet all of my mother’s needs. We could not keep her from running outside, calmed and reassured every other hour all night (since she didn’t believe it was not day time –despite the darkness outside). We couldn’t convince her we were not trying to poison her and that Satan was not lurking behind everything. We could not do this and raise two teenagers – not even after I quit my job.

Once I got over my guilt, my shame and my anxiety about my mother living in a nursing home, I found to my surprise that she was quite content there. As her memory faded and she began living more moment to moment, she settled; she began enjoy the routine of the nursing home. She liked the regular meals, snack time, exercise activities, games and events. Singers came in and she began dancing again. She got haircuts and manicures and enjoyed the company of both the other residents and the staff. She is happier in many ways than she has been in years. I did not DUMP her anywhere.

I believe there are likely some poor nursing homes, but from what I’ve observed over the past year, there are some fantastic ones too. Mom lives close enough that I visit her often – all times of the day and night. She is usually doing something when I arrive like helping bake cookies, playing bingo or enjoying a Bible Study.

When I read the words of Goldstein, I think – how dare you? You don’t know me, my mother or our situation. Perhaps because I know people said the same thing about me. “What if I’d been more patient? What if I’d just tried harder? Then maybe she’d still be living with me?” Perhaps that is true. Perhaps she’d have found her way to the street while I slept, but no one knows. The point is – would she have been happier here? I don’t think so.

So take that caregiver guilt and shame and shake it off. The needs of your spouse, your parent and your needs do not match a formula – Love your parent, your spouse and do your best and if that involves a nursing home – be thankful one exists to help you give them the care and support they need.

*P.S. Please note I did not post My Mother’s Caregiver Top Weekend Reading List last Friday. My Mom had two falls in less than a week and my schedule sort of got dumped on its head. Her falls demonstrate another example of my appreciation and support for my mother’s long term care facility. As the nursing home helped my Mom during this time the staff were so supportive and helpful. The day after her first fall, the doctor had already been in to see her by 6am. The physiotherapist had been arranged. In fact, if she hadn’t of been being cared for in the nursing home, she might still be in the hospital right now. Sorry Goldstein. Thanks everyone!

Today (Monday, February 20th) is Family Day here in Ontario, Canada. So, we get the whole day off to “be” family and I think that is really cool.

I spend a lot of time on here talking about my being a caregiver to my mother, but I rarely mention that I’m also a wife and a mother. If it wasn’t for the support of my family, I wouldn’t be able to support Mom.

Just last week, just before dinner a phone call came, my Mom had fallen and off we went to Emergency. Fortunately, the outcome was not the broken hip we feared. But, in this role I am supported and uplifted by my husband, teenage son and adult daughter. They held down the fort, texted me words of encouragement and understood my responsibility without question. They continue to hold me up as I hold Mom up. That’s what a good family does and I have a great family!

In Mom’s more difficult times, I have missed music nights to sit at her hospital bed side trying to coax her to sit still so the staff could put in her I.V. I’ve come home totally pre-occupied and spent with worry and grief. Last year I forgot to check my son’s report card for almost a week. (I doubt he minded). But still, they support me, encourage me, comfort my tears and listen to my venting and worrying. They are my family and I love and appreciate them.

So, this post is dedicated to them. I love you all so much! Happy Family Day!

I am standing at the mail box with a cheque in my hand. It isn’t made out to me – it is for my mother. The thought crosses my mind – “How easy it would be for me to deposit this into my own account.” My siblings wouldn’t notice, my mom wouldn’t even know. Now of course I do NOT do this, but it would not have been difficult for me to. It isn’t difficult to take advantage of people as vulnerable as seniors.

That is why sadly, it happens to seniors every day!

Recently, it was reported that an 82-year-old Thornhill, Ontario widow was scammed over $3,000 by a crooked contractor offering to fix her roof. Without completing the job, the man intimidated the senior who felt threatened. She paid and remained silent, until she discovered she was one of many he’d swindled.

The fact is this sort of thing happens all the time. According to a study by Human Resources and Social Development Canada, up to 10 per cent of Canadian seniors experience some kind of abuse. Most experts believe this is way higher, considering many seniors are dependent on people for their financial health, physical health, and over all well-being. Often seniors do not report for fear of retribution, embarrassment, they do not understand what is happening to them because of dementias or the biggest betrayal of all – it is a family member.

The York Regional police state that under the elder abuse umbrella, charges range from: variants of assault, failure to provide necessities of life, forcible confinement and psychological abuse, including intimidation, criminal harassment, uttering threats and harassing telephone calls. Financial abuse, including theft, theft by a person holding power of attorney, stopping mail with intent, extortion and fraud are also reportedly on the rise.

How easy it would be for someone to bilk their parent or relative out of their life savings or run up their credit card. It isn’t hard to imagine that family members could intimidate older parents or relatives into letting the live with them. Just last week I read about a troubled daughter, battling drug addiction, who was listed as power of attorney for her mother. It was discovered the daughter had been telling people her mother, who had Alzheimer’s, was dying, when actually she was withholding food, only giving her water and holding out for a large inheritance. Fortunately, people who cared spoke up and far-away family and authorities were notified.

If you or someone you know is experiencing abuse from anyone – even someone you trust like a family member, doctor, faith leader, social worker, speak up and GET HELP.

Here are some numbers to contact:

Ontario Network for the Prevention of Elder Abuse, offering community co-ordination activities, training opportunities for front line staff, public education sessions and other resources: 416-916-6728 or visit www.onpea.org

Seniors Safety Line Information, a referral and support line for seniors at risk of abuse available 24/7 with services in 154 languages: 1-866-299-1011.

“I never liked long distance running. Sprinting was much better. Your lungs and legs burned, but you were so full of adrenaline it hardly mattered. Just when you were about to run out of energy and power, the race was over.

This very day, a senior and his/her spouse or children will arrive at an emergency room at a local Ontario hospital.

That senior may have had a stroke, fell and broke their hip or is showing signs of dementia and delirium. They are not going to fully recover (something none of them know or have accepted yet) and this is the first lap of a longer marathon of life changes they will face – leaving their home, giving up driving, losing their independence and needing to be cared for by others.

This “moment” eventually happens to many elderly people, every day and everywhere. They will arrive at these hospitals frightened and looking for compassion. While their circumstances are different, they will all find one thing will be the same – an undertone of resentment to all the care they receive along with a sense that they are “taking up a bed” from people who are going to recover completely and return to their homes.

This is not a personal slam on hospitals or caregivers. During my mother’s hospital stays I met doctors, nurses, housekeepers, personal support workers and parking lot attendants who made me weep with their kindness. But the fact remains, hospitals are “Cure-givers” not “Care-givers”. The system is designed to treat and release patients.

With the shortage of nursing home beds and the growing elderly population, this has created a Care-Crunch. Doctors and staff are pressured by the administration and policies set by the Ontario government to get those seniors out of those beds as soon as possible. As I mentioned on my page Healthcare Hurdles the first hospital my mother stayed in was an hour’s drive from our home. By the third day my mom had been assessed as “nursing home ready” despite still battling delirium and psychosis that was NOT a permanent part of her final diagnosis. To avoid the pressure being placed on us to put her in a “temporary” nursing home bed an hour’s drive away, we arranged for her to be placed in a less secure local retirement home. Another move in her still fragile mental state meant more dangerous behaviour. As a result, five later, under doctor’s orders, she was taken by ambulance to a closer hospital (change #3 for her) and admitted. Less than four hours later, my mother’s new doctor phoned from the hospital, asking me when my mother was leaving – citing open beds in far-away nursing homes for this terrified woman who hadn’t even had a psychogeriatric assessment yet.

When I told the doctor we would move my mother as soon as a nursing home with thirty minutes’ drive opened up he said, “Well, then you’re going to have to pay!” That was only one of two conversations we had during her three month stay. It was also the day I decided to start this blog – the day I thought, I never want anyone to feel as helpless and vulnerable as I do right now.

The following two news articles – one current and another one from before Christmas – illustrate again this crisis of care.

No one should have to enter a hospital, in such a vulnerable and frightened state and be treated like a burden. If the system isn’t working any more than we need to make changes! I am not even suggesting that care should be free- simply available and offered with dignity and respect to people who have built the very structures we now take for granted.

So here’s a challenge: Let’s get involved, let’s make some noise and let’s make things better!

On Friday, the province (of Ontario) announced that retirement homes will face a surprise inspection at least once every three years, with high-risk homes being visited more often. This is the latest move to help police this growing industry and ensure good and dignified care for 40,000 retirement home residents:

Okay, Okay, so this last one I wrote in collaboration with Marriage and Family Therapist, Winnie Visser, but I think we all need a reminder to be intentionally encouraging to the people we love. Check out Winnie’s blog at:

“…One of the things I am learning from my mother’s dementia is the lesson of living in the moment. Her mind blocks out more and more messages. While it’s sad she can remember so little, the moments that she experiences are so sincere and so passionate they are almost child-like. It’s like she’s experiencing them for the first time. A curse, wrapped with blessing.”

As we come to the end of January, we wrap up what was Alzheimer’s Awareness month. It is funny how unaware we are of things until they touch our lives.

Yesterday, I had the opportunity to take part in our local Alzheimer Society of Belleville, Hastings, Quinte’s “Walk for Memories”. In a very touching moment, the participants – over 3oo people, were all asked to hold onto a long blue ribbon. As the ribbon laced it’s way through the crowd, all of us touching it, the point was made – Alzheimer’s weaves it’s way through society and affects us all. The group was able to raise over $54,000 for this great cause.

This week I’ve decided to share an “audio” blog, a two-part radio interview I shared with UCB 102.3 FM and host Melanie Linn about the effects of Alzheimer’s on my life and my family. We discussed why this blog came to life, issues of faith and friendship as I faced this crisis. Please follow the link to my tumblr page and find the mp3 file at the top of the left side. Click to Play. http://mymotherscaregiver.tumblr.com/

Sorry everyone, I usually post these Friday, still – it’s good stuff. There are articles on caregiving, elder care abuse and something I haven’t shared yet, but should have, caregiving from the perspective of a family struggling with cancer. Take a look:

Here is a very informative paper called Baby Boomers Confront the Caregiving Challenge. One of the experts is a friend to My Mother’s Caregiver, Bart Mindszenthy. Take a look:

Most of the links and resources given on My Mother’s Caregiver have been for elder care givers. However, any caring for a loved one needs support. This week I got a touching email from a man named Cameron who has been caring for his wife, Heather who has suffered with a cancer called, Mesothelioma. Thankfully, she is cancer-free. We thought their blog/story might be helpful to our readers. Pass it on to someone who needs it.

Psalm 139:V15-16 “My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”…

If you or someone you know could use some comfort and encouragement, read the rest of this devotional for caregivers are our sister site: My Mother’s Caregiver Devotional.

We don’t like bad news. No one does. Maybe that’s why people look the other way when they notice symptoms that their health might be failing. Don’t we all know of people who have waited months to get a lump checked or tried to self-medicate serious health concerns that need treatment and even surgery? The same is true when it comes to Alzheimer’s and Dementia.

The Alzheimer Society of Canada states:

“Last year, the Alzheimer Society asked Canadians how long they waited before seeing a doctor when their family member had signs of dementia. Nearly half said they waited a year or more! Why? They believed the symptoms:

Would go away

Were the signs of “old age”

Were episodic or not to be taken seriously

Needed to get worse before seeing a doctor.

Three quarters wished they’d known earlier. An early diagnosis means:

Medications to treat symptoms

Time to put legal and financial affairs in order

Keeping the person with dementia at home longer

Involving the person with dementia in planning future care

Understanding how to respond to the disease symptoms.”

In our case, there wasn’t years, there was only weeks to grasp the new reality that was facing us, but still I often wonder if we had watched a little closer, been more aware and had more information about our options ahead of time, if the experience wouldn’t have been so traumatic.

Last night I had the privilege of sharing about this very topic with our mayor and town council. I’ll share with you what I shared with them:

“Hello, my name is Sharon Osvald. Thank you for allowing me to come and share tonight about my experiences with Alzheimer’s and Dementia.

A little over a year ago, our family was blindsided, when my mother very suddenly began showing signs of dementia, as well as delirium and severe paranoia. Within a matter of a few weeks, the mom we knew and loved- just slipped away into a different person.

Despite having worked with seniors in nursing homes and other social services, I was completely unprepared and uniformed about Alzheimer’s, dementia and elder health care services.

This year the Alzheimer’s Society is promoting the importance of early detection of Alzheimer’s. When we look back with a more discerning eye, we DO see some signs of changes in my mom – not following conversations, changes in her attention, self-care and other subtle changes. Because no one else in our family had ever had Alzheimer’s and she was already over 80, we just assumed Mom would never get this. It didn’t even cross our minds.

Author, Bart Mindszenthy says: When it comes to Alzheimer’s, parents live in a state of “denial” and adult children “ in a state of avoidance”. In our shock, my siblings and I wasted valuable time denying the obvious and then having to search for resources- but not knowing what to look for or where to look. Myths and misinformation about nursing homes and aging was a distraction. Knowing what we know now wouldn’t have changed the fact that my Mom would need long-term care, but it would have made the road there a lot less ugly!

Alzheimer’s is a topic many of us want to think about. It’s negative, But, “We’ll cross that bridge when we come to it” thinking makes the journey that much more difficult for our families and community. We need to be informed and aware.

Think of how this affects our community. Just last week at the gas station, I watched an older man pacing outside his car, frustrated with having to wait while the car in front of him paid. My first response was, – what most of our’s would be- “what a jerk!” – but, then I recognized him and realized this man suffered from Alzheimer’s…and instead of annoyed, I felt compassion.

Think of that older neighbour who walks too close to your house (he used to be a teacher) or the neighbour who throws his garbage over your fence, maybe he’s battling with this disease. What if we as community responded with grace and information ? We’d be a better community.

Being open to these early signs of Alzheimer’s in our families and communities is important. Let’s help each other.”

I have added information and a new page called: “Crisis- Where to Start?” for the page that used to be called “At the Beginning”. I’ve added several links and information to “Eldercare 101” about home care, finances, power of attorney, finding a doctor, hospice and more. There’s a little bit more on every page, so look around.

Also, as you’ll see I am now available for speaking engagements and I have added a donate button. If you’d like to help support the work of My Mother’s Caregiver. Every little bit helps!

A BIG Thank-you to people who have already made a donation to this website!

January is Alzheimer Awareness Month. If you are a caregiver to an older parent, relative or spouse it is important to know what signs to look for.

Sadly, we often choose to look the other way when it comes to our loved ones developing Alzheimer’s and Dementia’s. Bart Mindszenthy, author of Parenting Your Parents, says that when it comes to issues like Alzheimer’s, parents are “in a state of denial” and their adult children or spouses are “in a state of avoidance”. These are difficult issues to face, but ignoring them just compound them. Knowledge will prepare you to face difficult times.

Do you know the Eight Signs of Alzheimer’s?

If there has been a change in the following areas, you may be dealing with Alzheimer’s or dementia.

Memory Lapses. Do they often forget things, especially things learned recently? Are there repetitive questions and re-telling of stories, sometimes minutes of being mentioned?

Confusion over words. Going blank when speaking occasionally is very normal. If it is increasing or becoming common place that should be a warning sign. Having difficulty saying the “right” word is also common. The word “hairdresser” might be used instead of “hairdryer”. This is very frustrating for the person trying to communicate.

Marked Changes in Mood or Personality. If your normally out-going mother becomes withdrawn or assertive and suddenly has uncharacteristic fears, this could be a sign of Alzheimer’s. Marked mood swings and changes to sleep and appetite should be cause for concern.

Trouble with Abstract Thinking. If your normally competent spouse is now struggling to pay the bills, follow discussions or instructions, see a doctor.

Difficulty Completing Familiar Activities. This was the first thing we noticed with my mother-in-law. An accomplished cook and baker, we arrived for a visit to find she had only boiled carrots for the meal. She also had half- finished knitting projects and only seemed to half-clean her apartment.

Disorientation. Getting disoriented in an area he knows well or getting lost and turned around more easily than normal while driving may be a sign of Alzheimer’s. People also can lose track of time – not remembering the time of day, month or year.

Misplacing items. Although many of us suffer with losing our keys, glasses or wallets, if there is an increase in this behaviour or things are being found in inappropriate places – be concerned. Finding a wallet in the freezer would be an obvious one. My mother developed this early on. She will “stash” stuff away in random places so no one takes it, only to forget where she put it. Taking it to the next level, then she will believe someone stole it.

Poor or Impaired Judgement. If your loved one is making questionable- out of character – choices, have them assessed. Some of those things might be: poor money decisions, hoarding or purging, can’t seem to make a simple choice, not taking care of themselves properly, their dressing not matching or not weather appropriate and not being able to plan ahead.

“…What a comfort. What freedom. He gives perfect peace to the blindsided. I place my paper plans at His feet and still shaking I take His hand in mine and choose to trust. I’m going to need it for what lies ahead.”…

January is Alzheimer’s Awareness month. I feel especially attached to this date because our Alzheimer’s journey began around this time last year.

Last year at this time I wrote an article about Alzheimer’s for our local newspapers. At the time we were in the thick of my mother’s dementia and delirium. We were uninformed and frightened. I felt like my mother had died – literally.

A year has passed and although her circumstances are still difficult and far from what we had ever hoped for her, I’ve begun to see that we haven’t totally lost our mom – we just have to look harder to find her.

This Boxing Day we got to experience one of those moments. Mom was well enough to come and have a meal with us. The last time that happened was the day we took her to the hospital, over a year ago. As long as Mom is still with us we will continue to seek out these sacred moments and cherish them for the miracle they are.

So in light of Alzheimer’s Awareness month, I am going to share the Alzheimer’s column that was published last year and the one that will be published this year. Where ever you are in your caregiving journey, I hope you are encouraged.

Last Year:

By: Sharon Osvald Originally Published in the Northumberland News and The Brighton Independent January 20, 2011

Sometime during the Christmas holidays I lost my mother.

Looking back I’m not really sure when I lost her. If truth be told, it started in tiny ways a long time ago, but it wasn’t until September that the signs became impossible to ignore.

The witty, extroverted, spiritual woman I’ve leaned on and looked to for support and friendship still exists in body, but her mind and personality are gone. In their place is an angry, frightened, paranoid stranger who can’t carry on a conversation and wants nothing to do with the people around her. While her long-term memory for people and details is still amazingly clear she can’t read a book, sit to watch her favourite television program or remember how to work the hot- and cold-water tap.

Dementia we call it, although it is so new to us that we don’t actually know the cause or have an accurate diagnosis. We just keep hoping and praying this fog will lift and it will all be some kind of terrible mistake – a simple medication mix up or result of grief and loss.

For a short time on Dec. 31 the fog lifted. She talked with us, joked reminisced and laughed. She hugged and kissed us, patted nurses on the back and told us how great it felt to finally be having a good day. Our hope soared. But when we left that day she looked me in the eye and with a frightening sense of clarity, told me she might not wake up this way tomorrow.

That was the last good day she has had so far. I have not been able to find that mom since.

Anyone who meets this new mom of mine now will probably not like her. She is unfriendly and does embarrassing things. She is not the welcoming former elementary school teacher and public speaker who used to preach and lead Bible studies and children’s programs.

I lost my mother during the Christmas holidays, but there will be no funeral. There will be no glowing eulogy or talk of happy memories as we release this beautiful 81 year old and celebrate a life well spent. Instead we mourn a little every day and say goodbye minute by minute while we watch her fade into a stranger.

January is Alzheimer’s month.

I am thankful a time has been set aside to shine a little light on the people that live in this darkness and their families. Special thanks to the caregivers, without whom we would be completely lost.

One Year Later: By: Sharon Osvald Published January 2012

January is Alzheimer’s Awareness Month. I have learned a lot about Alzheimer’s and related dementias since this time last year. In fact, a year ago I submitted a guest column to this paper sharing how I had lost my mother to Alzheimer’s disease.

I have experienced much since I submitted that column and have often felt the need to write a retraction of sorts. As it turned out, despite the loss, the grief and the changes to my mother’s personality and understanding, I did not lose her. Not yet. I learned she is still very much “here”.

I just need to look harder now.

I learned Alzheimer’s is a terrible disease. It slowly robs us layer by layer of the person we know and love. It often leaves them tormented, paranoid, afraid and unpredictable. There have been many ugly moments this past year. But, I have learned something else too. I have grown to admire and appreciate the amazing caregivers that exist in our area and the magnitude of the jobs they do. The love and care I witnessed while Mom was at the Trenton Memorial Hospital, Applefest Lodge and her current home, Maplewood is second to none! I’ve grown to recognize the value of our local Alzheimer’s Society and what they do for our community. I have met brave and encouraging spouses and children whose hearts are breaking – but still they visit and care for their loved ones faithfully. I’ve also been privileged to write about my journey at www.mymotherscaregiver.com and find a whole community of like-minded people.

Through all of this, I have learned to enjoy the good moments. You know the moments I am talking about. The days your loved one is well, lucid, funny and “in the moment”. Conversations are intimate and clear. You feel a sense of sacredness like you’re experiencing a little miracle and this might be the last time they are this good. This Boxing Day for the first time in over a year Mom was well enough to come to our home for a meal. It was a short but wonderful gift I am so thankful for. I resolve this New Year to enjoy these moments for what they are without pining for them on the days that aren’t good.

I’ve also learned to live without regret (ok, most of the time). Looking back at “What if?” and “What could have been?” is an exhausting and pointless exercise. I resolve to concentrate on what I can do and let go of the rest. I also resolve to share the burden- not just mine- but others who are carrying the weight of this disease. Helping each other just makes the load lighter.

The day may come when she doesn’t remember me and those little nuggets of sharing and knowing will be gone; it will break my heart. But even then, I will try to find “her” in a smile, a hug or the twinkle in her eye. After all she’s my mother.

On Friday, the province (of Ontario) announced that retirement homes will face a surprise inspection at least once every three years, with high-risk homes being visited more often. This is the latest move to help police this growing industry and ensure good and dignified care for 40,000 retirement home residents:

Okay, Okay, so this last one I wrote in collaboration with Marriage and Family Therapist, Winnie Visser, but I think we all need a reminder to be intentionally encouraging to the people we love. Check out Winnie’s blog at:

At the end of every year we some how can’t help but find ourselves reflecting.

We pick up the journals and begin to ponder the things we’ve accomplished or wished we accomplished and the events that shaped our lives. Some of these events were expected and some were a big surprise. This is especially true for the “Sandwich Generation”, people caught between the often-conflicting roles of raising children and caring for aging parents or relatives.

It was last year at this time that I got my first big surprise when my mother began showing very startling and rapid signs of vascular dementia. So as I stand back and reflect on lastyear, I see there are things I have done well and things I will do better.

Thus my five top “caregiver” resolutions for 2012.

I will enjoy the moments. You know the moments I am talking about. The days your loved one is well, lucid, funny and in the moment. Conversations are intimate and clear. You feel a sense of sacredness like this might be the last time they are this good. I resolve to enjoy these moments for what they are – a gift- without pining for them on the days that aren’t good.

I will live without regret. Looking back at “what if?” and “what could have been?” is an exhausting and pointless exercise. It is what it is. I resolve to concentrate on what I can do, what I can change and let go of the rest.

Iwill stop trying to be all things to all people. Guilt is an ugly taskmaster.Being a member of the sandwich generation means you are the wearer of many hats. I resolve to shelve the guilt next time I miss my son’s jazz recital because I’m called to sit with my mom who needs my help. I will stop apologizing for not meeting everyone’s needs simultaneously and just do the best I can.

Iwill give myself permission to feel what I feel. Being a caregiver brings a host of emotions. You are allowed to cry, grieve, laugh, be angry and feel lonely. Scolding yourself or trying to be brave is a waste of energy. Many times in the early days of our family crisis, people tried to rush my healing, implying I was over reacting: “Your mother is over 80 …what did you expect?” The age of my mom didn’t diminish my loss. I resolve to feel what I feel and then get up and do what needs to be done.

Iwill surround myself with people that lift me up. Even well meaning people can be mean. How many times have you barely been holding on and along comes some person (without a clue) just in time to deliver a wounding comment or a word of advice without having all the information? The world is full of beautiful, encouraging and supportive people. I give myself permission to surround myself with these people and take the others off my speed dial.

Feel free to adapt any of these resolutions to your list. Wishing you a wonderful new year!

Comfort comes in many forms, but for me and many of our readers, faith is a big part of getting through the tough times.

As a result, in the new year a sister site is beginning called “My Mother’s Caregiver Devotional”…a devotional for caregivers. Each week I will share some of those words of comfort and encouragement for not just the body and mind but the spirit as well. I’ll announce those posts right here.

Having elderly parents or being a caregiver to a relative or spouse can bring out a lot of emotions during the Christmas season.

Lisa Gilmore, activity director at Applefest Lodge Retirement Home, whose father is battling Alzheimer’s, decided that happy memories were the best antidote for this. She is our guest blogger with her story: Herbie’s Tomatoes~S.O.

In travelling the Alzheimer’s road with my father and his wife, I have tried to remind myself and my brothers, as much as I can, to keep a sense of humour.

Dad was diagnosed with early onset Alzheimer’s for 7 years but it took 3 years to get that diagnosis. I noticed something was going on before that and suggested he get tested. When he was first diagnosed he said “I have short term memory loss.” Even with a diagnosis of Alzheimer’s, his doctor would not take his driver’s licence. Looking back, I think his hoarding and lack of focus at work was probably happening for years. He covered well. The brain is a powerful force.

Dad is now being fed by the staff, which I know is the next stage. I am prepared. I know what to expect. I know it gets worse. I also know that as a daughter living six hours away there is not much I can do except be the voice on the phone.

We are still hoping for one more day of “the old Herb”. I pray Dad and his wife have one more Christmas with things as “normal” as they can be. I just wanted to share one of the funny memories I have of my Dad.

So here is to all the caregivers and their loved one’s. Have a Blessed Christmas!

Herbie’s Tomatoes

Herbie is my Dad. Now Herbie is not the most horticulturally minded man on the planet. He tried. For my mother’s sake he tried. I will never forget the image of my dad planting tomatoes one year.

We lived in a small house with a smaller yard that my mother, with her gardening magic, transformed into a backyard and front yard oasis. There were a few portulacas amongst the rock garden in front and beautiful morning glories in the back to greet the birds and butterflies.

I remember the day she asked my Dad to pick up some tomato plants -six she said. She didn’t have room for vegetables. So six he bought -six boxes with six plants ineach. You do the math. With about a dozen of the yummy fruit on each plant there were just too many to stick in the ground. So mom planted what she needed and loving cared for her tomatoes.

Dad began to stick tomato seedlings wherever he could. He must have gotten tired because I still remember him actually sitting on a stool at the side garden with a spoon trying not to waste a plant.

We all laughed that we could just reach out the back door and grab a tomato. And all of Grandma Pearl’s recipes got tried out that year. Even fried green tomatoes -before anyone else had even heard of them.

To this day, many years later I still love the smell and taste of a good ripe tomato and can’t help picturing my Dad, now in his 70’s, planting tomatoes with a spoon.

I'mÂ sitting at the table stirring the spaghetti when a teardrop falls into my plate. My family just looks at me confused, helpful and concerned. â€śWhatâ€™s wrong?â€ť they all ask. I donâ€™t knowâ€¦I really donâ€™t. Nothing new has happened or changed. I am happy, healthy and surrounded by loved ones and yet here I sit with my brain saying, â€śget a gripâ€ť while my emotions say â€ślet it out.â€ť In my heart of hearts I knowâ€¦itâ€™s that Christmas is coming.
Christmas and other holidays bring out the strongest emotions â€“ good and bad. ThingsÂ you'veÂ handled all year, with grace, mysteriously pull you apart at the seams once the carols start. That my Mom has dementia and lives in a nursing home are not new facts; but that she has dementia and lives in a nursing home at Christmas time â€“ this is new.Â I'veÂ got the tears in my noodles to prove it â€“ you probably do too. :)
I have been a very blessed person. When I look around me at the pain people carry,Â I'veÂ experienced so little pain. I have not endured divorce (as a child or an adult) and when it comes to loved ones I have lost so few. I have never battled illness like cancer or held the hand of someone close as they fought it. My husband and children are healthy. My daughter will marry this summer â€“ and yet I weep in my pasta, thinking what the heck is wrong with me? I should be feeling thankful!Â The answer: I miss my Mom and even more now that it is Christmas â€¦and that isÂ OK.
I feel like I am losing her slowly and the losses come in layers. Although she is presently not paranoid and tormented, the recovery from her last â€ścrashâ€ť was incomplete. She has definitely lost some clarity. She canâ€™t seem to string three sentences together that are connected. Although she is â€śhappyâ€ť presently, our conversations are making almost no sense. Last week she was unable to pull up words to express her thoughts. For the first time, instead of replacing them with other words - she replaced them with made-up words and gibberish. Sheâ€™d scold me for crying for her instead of laughing with the â€ślivingâ€ť.
Yet, I do celebrate that she is still â€śhereâ€ť. Even if she wonâ€™t open her stocking with us or help me serve the roast dinner. I still have Mom this Christmas â€“ even in part. We still have her laugh, her puns and the sparkle in her eyes. That is more than many can say.
Our last visit she was trying to tell me about the line-dancing activity sheâ€™d just participated in. When words failed her, she rose from her feet and pulled me up with her. I thought she was going to hug me but instead she placed our hands in the dance position and said, â€śWill you lead or will I?â€ť Mom and I danced the two-step around her nursing home bed and I realized she had just given me another memory to cherish â€“ her Christmas gift.~S.O.

When I started calling myself “my mother’s caregiver” many people assumed Mom and I lived under the same roof. That is not the case. While, workload and anxiety is much higher for a live-in caregiver, there are many different types of caregivers. As the number of seniors continues to rise, more and more people (like us) will find themselves responsible- to varying degrees- for parents or relatives.

A few weeks back at a house party, I was surprised at how many people had a parent/s in long-term care or on the verge of needing some care. Of course my “radar” is set to “senior”, but still at this small house party alone there were five couples (that I know of) with family members battling dementia and most of them lived at least an hour’s drive from that person. All of them were worried.

While there are days I think a little “out of sight, out of mind” might be nice, caring for a parent who is far away is no picnic either. The guilt and the worry definitely go up a notch. It is hard to know by telephone or email conversations whether their relative’s situation is changing or not. It is easy to over-react and under-react to a parent’s changing moods and impossible to get a handle on how they are really doing. There can be past baggage/ personality issues to cloud their judgement, i.e. “Mom always did exaggerate” or “Dad is just trying to make me feel guilty again.” Also the changes they do see are often so subtle they could be related to other things. Often a parent becomes depressed after the death of their spouse or a move, making it difficult to tell the difference between stress, grief and dementia.

If you find yourself in this situation what should you do?

Make contact with a trusted neighbour, pastor, professional or friend of your far-away parent. Explain that you are concerned and request they let you know if there are any consistent changes to your loved one’s behaviour, habits, memory or mood.

Contact your parent/relative often and consistently, but also try to reach them at different times of the day and week as well. This will help you see if there are any concerning patterns. (How are they eating, sleeping, behaving?)

Note whether they are telling you the same thing over and over again or if the story is not the same every time.

If you have reason to believe your parents are not taking adequate care of themselves, attempt to connect them with community care access to create a plan that will give them some help in their home. (Many parents will resist this process. All you can do is try.)

Just try your best! Just like when we were teenagers and our parents couldn’t make usdo anything we didn’t want to do – the same is true now for them. Unless our parents are completely unable to care for themselves, all we can do is suggest alternatives. They may refuse them adamantly. All we can do is our best and beating ourselves up with guilt for what we “cannot” do, isn’t helping anyone. ~S.O.

Ok, so I know I wrote only a few short weeks ago about walking away from guilt and worry, but well…it’s a process right?

You see, now that Mom has been living in the nursing home for several months, I have grown attached to other residents and recently some of them have passed on. The fresh reality and emotion that comes with this is surprising to me. I know (with my mind) that I shouldn’t be shocked when elderly people die or their rooms are replaced with new residents, but oddly enough, I am. Worry reminds me that we’re not finished being blind-sided. One day we too will say goodbye to Mom and her room will take on another, just as if she was never there.

So, the other night I’m lying in bed (bummed out and wallowing in it) staring at the ceiling taking turns between the these two bad-boy emotions when suddenly, with absolute clarity I recalled a conversation I had with my mother – back when she was still telling me what to do.

Just after my father had passed away, I became overwhelmed with a sense of responsibility for my mother. She was almost 80 at the time, but was far from needing a caregiver. Yet, in my mind I had jumped in line and assumed the role. How would she cope on her own? They lived in a small village and had to drive to get anything. She didn’t like to drive. Could she afford things on her own? What if she had an emergency – she was alone and so far away? Between the visits, the anxious phone calls and heavy conversations (all initiated by me) Mom figured it out and sat me down for “the talk”.

“You have got to stop worrying about me,” she said. “First of all, you have your own family to care for and secondly, Our Heavenly Father is looking after both of us – and He started looking after me long before I met your Dad.”

As her words came to my mind I had to laugh out loud. Wouldn’t she be ticked off if she knew I was losing sleep over her well-being? Age, sickness – even death – they come whether we worry about them or not. Instead we exchange faith, hope and peace of mind for a false sense of control, thinking: “If I think about the problem, I must be doing something about it.”

Mom would have wanted me to care for her, but not become consumed by her care. Yes, our parents and the people who we care for they need our care, our support and our love- but not our preoccupation. It doesn’t help us and it doesn’t help them.

So, I return to my place of faith remembering whose daughter she really is

Eating a well-balanced diet in your senior years is crucial to promoting good health. Foods rich in essential vitamins and minerals can help reduce the risk of heart disease, stroke, osteoporosis, type 2 diabetes, anemia, obesity, and other conditions. A balanced diet also gives you the energy needed to make it through the day.

One of the best ways to maintain a healthy weight and ward off heart disease, diabetes, stroke, high blood pressure, and health complications is to exercise and stay active. It’s important for seniors to find an exercise activity that they enjoy and can perform safely. In addition to aerobic exercise, seniors should also incorporate strength training, balance, and flexibility into their workouts.

Seniors need to exercise their brains just as much as their bodies. Older adults can improve their brain function by reading and playing mind games, such as crossword puzzles and Sudoku. Another way to exercise and challenge the brain is to learn a new skill like painting or playing the piano.

A big part of staying healthy as a senior is keeping up with your regular medical check-ups. From annual immunizations and preventative screenings to regular teeth cleanings and eye exams, it’s crucial that seniors make their doctor’s visits and use this time to ask questions. Seniors may want to bring a trusted friend or family member along to have a second set of ears.

Studies show that socializing, especially in the senior years, can help delay memory loss and preserve brain health. Keeping an active social life is critical to one’s well-being and happiness. Communication and social interaction may also prevent depression and reduce stress and loneliness. They can join a seniors group, volunteer, or simply stay in touch with friends and family.

Seniors need about seven to nine hours of sleep per night, but most aren’t meeting that recommendation. Many seniors have trouble falling and staying asleep and they tend to sleep less deeply than younger adults. Even though seniors tend to get sleepier earlier at night and awaken earlier in the morning, it is still crucial that older adults get enough sleep at night to keep them active, alert, and healthy.

It’s estimated that one in three seniors suffers a fall ever year, many of which are caused by hazards around the home. Although most household accidents are preventable, seniors still need to take extra precautions to stay safe within their home and out in public. Depending on their ailments or needs, some seniors may want to invest in safety equipment and make minor home modifications, such as handrails and a handheld shower head.

Well, in case you’re wondering – I did see the twinkle. Despite being a reluctant visitor, I was blessed with not only the twinkle – but also the whole sparkler! When I arrived for the visit I delayed, I found my mother awake, smiling, dressed nicely with a fresh new haircut. I just shook my head, reached out my hand and accepted the gift – one more good day with Mom.

For whatever reason, Mom is back on the upswing. Yesterday I called her “Old Girl” and she gave my butt a slap and reminded me that if she got her shoes on she could still chase me down the hall. Laughter replaced fear and reminiscing took the place of paranoia.

Before our care giving journey began I knew that people with Alzheimer’s were forgetful, sometimes paranoid and delusional, but I had not anticipated her behaviour cycles: weeks of good – crash – slow rebuilding trust and clarity – weeks of good days- crash. That appears to be my mother’s pattern. Unfortunately, it doesn’t always correspond with holidays like Mother’s Day or when her out of province visitors arrive. Yet, for now Mom is back- in part.

The whole experience gets under your skin though. It leaves me late at night asking questions in the dark. What will happen to me as I age? Will my husband get like this and will I become his caregiver? What will the future hold? How will I cope?

One of the comments from Betty J. to my last post echoes this sentiment. She writes, “Now we worry about how we will affect our kid’s lives as we age. We really have to have faith that things will be revealed as we go along.”

Guilt and worry are the two thieves in the night that come in and rob our sleep and peace of mind. We look back and say, “What could I have done better? What if I had seen the signs before? What if we’d encouraged her more not to sell her house and set up supports for her there – would she still be with us in heart and mind?” Guilt laughs are our helplessness and keeps us spinning and when we’re finished chewing on that bitter pill, worry is right behind it.

One of the benefits of getting past thirty…ok…forty…is that I’ve finally learned that life cannot be controlled, managed or manipulated. We all are dealt a hand that is different – and for the most part what we get is what we get. Yes, we must be wise with our exercise, eating and caring for the bodies we are given, but the rest is a mystery.

This realization can do two things to us. It can paralyse us with fear and anxiety or we can rest in its peace. It is true we will age. If we live to be as old as my mother we will say good-bye to those we love. We may be touched by cancer, dementia and loss. But, knowing there are still so many good moments to grasp should keep us in the here and now. Knowing we are not in control means we can relax and enjoy the gifts that come our way and not be robbed by worry or guilt. What’s done is done and what is to come will come, but today is a gift. As my friend Betty says, “We really have to have faith that things will be revealed as we go along.”

It’s one of those days- we all have them. Today I am going to visit Mom.

I was going to go this morning, right around 10am when she’d be finished her breakfast so it wouldn’t interfere with the exercise class she attends on her better days. But 10 o’clock came and went and now it is after 12 noon and I still haven’t put my coat on.

A sense of sadness is hanging over me today. The last few weeks our visits haven’t been good. There haven’t been those little jewels of connection, those moments where I still can see the twinkle in her eye and know that she is still “in” there. Instead she has either been frantic and paranoid or distant and mumbling. I find myself throwing in that extra load of laundry, checking my email one last time, wrestling with the dread that has settled in my bones.

Today I don’t want to visit my mom.

What a horrible thing to say, to think, to write…but it is true. I swallow a little guilt. It doesn’t mean I don’t love my mom. It doesn’t even mean I won’t go – I will. But some days it is difficult to muster up the smile when all we see is sorrow. We all have days like this and that is ok.

On days like these I remember with clarity my mother’s words a few years back as we stood in an antique shop down the street from her home. It was during one of those “If something ever happens to Dad” talks. We were chatting about the idea of Mom coming to live with us. “We all get along, you could help us and we could help you – it just makes sense.” I said. With that prophetic-mother look in her eyes she said calmly, “You don’t know what you are saying. As people get older they get less fun. I may not be the person I am today.” Those words are ringing inside me today. She knew. She had lived long enough, watched her parents and others long enough to know what I know today. Life is fragile.

She also knew that every day was a sacred. She knew that there were no guarantees and that was ok with her. That day year’s back, she wanted to enjoy my company, to window shop and laugh – not plan for future days that may never come.

So after I post this I will finish my lunch, get on my coat and share this sacred day with mom. Maybe, just maybe, I’ll see the twinkle.

After many promises, I have finally added the Local Links and Resource Links pages to My Mother’s Caregiver.

Thank you to the Alzheimer Society of Belleville, Hastings, Quinte for allowing me to share the Resource Links from your page and for the work you do in supporting caregivers in this area.

Although some of these resources are aimed at people living in the Belleville, Quinte, Hastings, Prince Edward County and Northumberland County – there are links and resources for anyone caring for a loved one in Ontario. Click around and share the resources with people you know who are looking for answers.

Three months ago I was so frustrated with blogging I went to bed in tears calling Blogger and Word Press names like stupid and … well, other things. But if you sit at your computer for hours and hours, for enough days in a row and long enough, you start to figure it out – at least a little.

Hey Y’all, I’m volunteering for the Alzheimer Society of Belleville, Hastings and Quinte. They have a HUGE three day Fall Book Sale going on this Tuesday, Wednesday and Thursday at the Bayview Mall, 470 Dundas St E. Belleville. They do a great work (with very little funding). The first day books are full price, second day books are 1/2 price and the third day (although selection wil be smaller) you can bring a bag and fill it for a toonie. It’s a really BIG sale. Come out and get a good book while supporting a great cause. thanks:)

Looking back with a family member yesterday, we realized we’ve reached the year marker for when my mother’s dementia began to rob her of her peace of mind and independence. Almost a year since we lost our mom – sort of. Mourning and grieving for someone who still exists is a complicated affair. It seems her situation is an ever-present, wound that can’t heal.

As I mentioned in the post “Mom’s Rough Day”, my mother has taken a down turn. The little bit of Mom that was still there is even smaller now. Some days are better than others. Friday she was calm. We sang songs together and ate cake. Today she is frightened, distracted and agitated and carrying on a conversation is a chore.

Yet, deep inside me I feel it – a healing is happening. I am not sure when it started but it reminds me of a nosebleed. You know what I mean. There you are pinching your nose, holding up the cloth to your face and suddenly one minute you realize – “hey, I’m not bleeding anymore.” That’s how I feel about my mother.

Not to say I am not still sad. I continue to grieve and mourn. I want my whole mom back! Today I am weepy and tired. It wouldn’t take much to bring me to tears because I hate to see her suffering. But at the same time, I’m not crushed like I was before. I feel stronger, more content and ready to face the future. I have begun to see our good visits as sacred moments that I am incredibly privileged to have. The shared laughs, hugs and little intimacies where a true connection happens have begun to feel like miracles. I feel like Mary of the Bible (Luke 2:19) when it says, “But Mary treasured all these things and pondered them in her heart…” I find myself leaving our visits thinking I’ll have to hold onto this because it was a gift I may not get again.

Whether you are caring for a parent, a friend, relative or spouse, I want to encourage you. On the days you think, “I just can’t do this!” You can. I believe there is meaning and purpose to everything that happens under the sun, no matter how chaotic it feels. We have the incredible privilege and calling to bring love and comfort to someone who is suffering. Yet, get some help. Find some tangible support. Contact your local Alzheimer Society, church group or where ever you find support. Cry, share, laugh and be loved. It hurts, but the bleeding really does stop.

Here’s a local resource sent by Elizabeth. It is for caregivers or seniors considering selling their homes. Come THIS Thursday, October 27th for the Book Launch of Beyond the Sold Sign by local writer, Julie Wilson.
The Book Launch will take place at 240 Presquile Parkway, Brighton, Ontario (near the entrance to Presquile Provincial Park) Thursday, October 27th from 1-3pm. There will be light refreshments. Buy a book and enter a draw for a great prize.www.beyondthesoldsign.ca

If you’re reading this you might be thinking – get in line. Today was one of those really bad days for my Mom. Perhaps she is fighting infection. Whatever it is, today is one of those days when delirium and dementia have her mind gripped in their torture. Today she believes everyone is against her. She is frantic, sweating, trembling and destructive. It took three of us to keep her from getting out the door at the nursing home when someone tried to enter. Today she has no peace and it breaks my heart. I hate it. What a horrible disease!

And yet, even in this horrible moment I feel blessed. Blessed to have been able to bring a little comfort to my mother when she could find no comfort. She trusted me enough to take some of her pills. She had enough faith in me that for just a moment she believed the whole world just might not be against her. It reminds me of the times she must have walked the floors with me, rocking me in a state of fever and sickness- refusing to be calmed. Bringing people comfort IS a great privilege.

Also, a lovely gentle-hearted woman who comes to the nursing home to visit her husband blessed me. Her husband has Alzheimer’s and has more bad days than good from what I’ve seen and yet this beautiful woman took the time to come and walk with my Mom and sit and ask me if I was okay. Whenever I begin to doubt if there are any good left in the world, someone like her reminds me- there really are still people who care. I am not alone and either is my mom.

Finally, the staff blessed me. Despite behaviours that must have been a great disruption to their busy jobs, they all cared. They all displayed honest compassion and concern. Today they cared and made my burdens it little easier to carry.

Hopefully, by sharing our stories it will make all our loads a little lighter.

The Alzheimer Society of Belleville-Hastings-Quinte hosted an event called “Rediscover Me,” was designed to give caregivers a pressure-free day. See the below link for the full story and for more information about the help and resource available for caregivers.

One of the scariest and most exhausting aspects of caregiving is when your loved one has to be hospitalized. This is especially true when you are waiting for them to be placed in a nursing home.

Most times, hospitals are not designed to meet a senior’s long term needs. There’s not enough recreational or mental stimulation, exercise and patients run a greater risk of getting sick. For the families watching and waiting it can be very difficult.

When my mom was hospitalized we waited almost four months for her to be placed in a home that was in our area. For more remote locations this wait is even longer.

This Saturday, a friend and former co-worker, Donna Cooper passed away after battling cancer. It’s hard to believe that at Christmas time she just thought there was something wrong with her back and today she is gone.

I know it sounds so typical, but Donna really was a special person. She was a little fire cracker of a woman with a heart of compassion and a wild sense of humour. While scrolling through my cell phone photos I found one of her standing on a chair dancing. She made everyone laugh. She spoke the truth in love. She made the world a better place.

Donna believed that her soul was secure in her Lord and Saviour Jesus Christ and I believe that she is finally at rest in His presence.

There were people who cared for her in her last days, her husband, family and close friends. This is not only a tribute to Donna, it is a tribute to those caregivers, for their great love and their great loss.

Working from home has some perks. Having time to get my laundry done is one. But lately, for the first time since my children were very little, I have been able to join a ladies coffee break group one morning a week. This group – called Mom to Mom – is a faith-based group and allows mothers to encourage and support each other emotionally and spiritually. There are also caffeinated beverages and sweets so I was pretty pumped to be a part of this.

It was at our first gathering when asked to introduce ourselves that I recognized there had been a change in the way in which I define myself. After mentioning the existence of my daughter and son, I felt the strongest compulsion to mention my mother. When I let the opportunity pass, I almost felt guilty.

Welcome to the sandwich generation I thought. I don’t just need a Mom to Mom group, I need a Mom to Mom to Mom group! It turns out one such group just might exist. The term sandwich generation refers to people caught between the often-conflicting demands of raising children and caring for aging parents or other relatives. According to a Stats Canada people caring for seniors are more likely to be women who are employed and married. Like me, some 15% of sandwiched workers reduced their hours, 20% had to change their schedules and 10% lost income.

Don’t get me wrong, I am not complaining. This is a role I have offered to take, but just like when I decided to have children I had no idea what I was signing up for. Once it happens to you, you are never the same – for better and for worse. Just like parenting, when Mom is not doing so well, I can find myself feeling resentful, helpless and most often GUILTY. But when we have a good day, I feel elated, I tuck that experience away and cherish it for the fleeting moment it was.Then I thank God and get up to live another day.

But right now I have to get off this computer, go visit Mom at the nursing home so I can be on time to pick up my son :)

If you happen to have stumbled across this blog you must be thinking – Is THAT it?

The answer is I am working on it. :) Not a real techno-person I have been learning the technology and figuring out things as I go along. There will be AMAZING, WONDERFUL, POWERFUL moving content on this page – very soon. So visit and visit often.

In the meantime, since I live in Eastern Ontario. Here is a local resource you might want to check out a book launch is happening for author and realtor, Julie Wilson at the Quinte West Public Library in Trenton, Ontario. She is sharing from her experience with her mother and clients insights about selling your home and preparing for life in the later years. If you plan on attending call 1-855-803-2220. To purchase the book or find out more info visit: www.beyondthesoldsign.ca.